A New "Normal"

Well, needless to say things have been pretty chaotic the last week! Cohen's newborn appointment went great (last Monday) and at that appointment he weighed 8 lb. Dr. Gilmer did hear the murmur but said she strongly believes it will close out. But just to be safe we have an appointment with a cardiologist in six weeks to get it checked again. Due to his weight loss in the NICU, she wanted to see him again in one week to make sure he was gaining weight. I am SOOOO happy to report that he gained TEN ounces in seven days! He now weighs 8 lb. 10 oz. What an answer to prayer! We go back next Tuesday for his 1 month appointment. (The nurse at the doctor this morning said, "Do you feel like you live here?", my response, "you have no idea!")....

Meanwhile, Brad took Nora to her allergist/immunologist appointment this morning. They did a skin test of 16 of the most common allergies, and all of them came back negative. So that is very good news! Dr. Robinson then sent them over to the Children's Hospital for blood work which will check out her immune system. He said we should know something from the blood test in two weeks. The doctor told Brad that most children in daycare (up to age 2) experience about 10-12 illnesses per year. For Nora that has been 24 illnesses. He said it could just be bad luck on her part, but that the blood work should tell us more. We are crossing our fingers that she is just unlucky and the blood work will come back normal.

Brad is off for another week (thank goodness) as we continue to settle in to our new "normal". Cohen is eating about every 2-3 hours so, "no" we are not getting much sleep. But I know that soon enough he will start sleeping more, and I know these sleepless nights will end...eventually :)  He is doing a wonderful job nursing, but is not so good with a bottle. That is completely okay at this point, as long as he is eating I am thankful!

Uncle Chris, Aunt Angie, and Nonna came in this past weekend! Chris and Angie got to meet Cohen for the first time!! He of course just slept and made old man noises. He really does grunt and moan like a little old man. My mom, Chris, and Angie then took Nora to the safari located a few miles from our house....Nora loved it! Brad's truck now has huge tongue marks from the water buffalo. If you live in the Knoxville/Sevierville area and have not been to Circle G Ranch, you really need to check it out. Its a drive-thru zoo, and the animals literally come right up to the window!! Zebras, camels, llamas, reindeer, etc. There is also a petting zoo!

On Sunday, we got to visit with friends from Cookeville (the Noonkester family) and Kingsport (the Coates family! Nora and Adele were so much fun to watch and provided quite a bit of entertainment to us all. Cohen pretty much slept the entire time...surprise, surprise!

We continue to be amazed at the outpouring of support from friends and family! Our church family and friends have provided a meal every night for us for the past TWO weeks!! We have become so spoiled :) That along with the prayers and encouraging words have kept us so uplifted! Again, a huge thank you to everyone! We love you all!!!!

Faith, Hope, and Love

Faith- noun: (1)firm belief in something for which there is no proof (2)complete trust
I have been around the church all of my life, and have heard the word "faith" for as long as I can remember. I always thought of faith as being something that I had in God (example: I have faith in God that He will take care of me....I know it sounds like a young child, but that's what I was when I thought it). After the past 28 years (and more importantly the past five) I now realize that faith is something I will never completely grasp. Faith for me is TRUSTING. Trusting that no matter how dark it looks, there is always a light that can be seen. Faith is not understanding why things happen, but knowing that our Creator does know, and knows what is best for each of us. Faith is believing, when you have no other reason to believe. Faith (for me) is trusting in the Lord, when you feel you have nothing left to say to Him.

Hope- verb:(1) to desire with expectation of obtainment (2) to expect with confidence
Hope can be used two ways; as a noun and as a verb. I am going to use it interchangeably. In my life I have done a lot of hoping. When I was young, I hoped for material things (a horse, bike, to watch Riverdale High School win the state championship, etc.). In college I hoped for different things: security, love, a job, etc. After college, what I hoped for, once again changed. I hoped and prayed for miracles with loved ones struggling with illness. I hoped for comfort when I thought I would never feel whole again. I hoped for safety for friends and family when I realized that bad things can happen and people can die young (I know this sounds morbid). And up until recently, I look back and realize all the things I hoped for were very selfish. Everything I hoped for benefited me in some way. My hope now focuses on my children. I hope for them to be safe, healthy, and happy. If they are safe, healthy, and happy then I can rest assured that I will be completely happy!

Love- verb:(1)  unselfish loyal and benevolent concern for the good of another: as (2) the fatherly concern of God for humankind
I have several pet peeves, and one of them is people who overuse the word "love". This simple four-letter word holds some of the deepest meaning in the human language. It was out of "love" that God gave His only Son so that we could be saved. I will never understand a love like that. I am so thankful that a love like that exists, so that I (and my family) may know eternal life. I didn't know true love until I met Nora. Love has taken on a new meaning for me. Love is completely unselfish. For me, its doing everything I possibly can so that Nora and Cohen will know the love of God, and will see it daily through Brad and I. Its loving them more than myself and being willing to sacrifice everything for the two of them. I feel fortunate to have gotten to witness several acts of love at this point in my life. Some of them among family members, some among friends, and others at work. Love is the word for me that means everything and without it, we are all lost.

I want to say a HUGE thank you to everyone who has spoken Cohen and our family's name to the Lord the past few weeks. I have no doubt that He heard each prayer and comforted our family during this time. I am so thankful to say that yesterday at 7:00 p.m. Cohen was discharged to come home. The joy that we felt was indescribable! He is doing great and we are getting settled in as we speak. I do not know why Cohen got sick, and the doctors still do not know what caused it. I do not know why Nora was born early, and again the doctors to this day cannot explain it. I do know that both experiences with our children in the NICU have made Brad and I stronger. I do know that both experiences have brought us to our knees and have caused us to question God. At the end of both experiences we have come away thankful and more aware than ever of a Creator who loves us. We watched both of our children struggle their first few weeks of life, and we their earthly parents were unable to do a thing to help them. Thankfully, they both have a heavenly Father who loves them even more. 

I write all of this because I know I am like so many people who pray on a daily basis. I pray for friends, family, our world, those who are suffering, situations I can't control, and guidance. The question that I am stuck with right now is, why does it take one of my children being in the NICU to make me have an ongoing conversation with God? He wants this from me all the time; just a steady conversation about life. While I don't know and never will why any of the "bad" things happen to us, I can't help but think once again God was reminding me that His plan is far better than mine, and that I HAVE to trust in Him at all times. In the good times and the times when I can't understand what is going on. I have to have faith that He will see me through it, and whatever trial it is; that trial is preparing me for something later on, that I can't see yet. I believe  He reminded me to hope at all times, knowing that he will give me the desires of my heart (Psalm 37:4).  I believe that He reminds me every day that He loves me in a million different ways. Thank you again from the bottom of our hearts for the prayers, encouraging text messages, phone calls, dinners, etc. I pray that we are able to repay to each of you in the future!

And now these three remain: faith, hope and love. But the greatest of these is love.

- 1 Corinthians 13:13

Patience

There really isn't any new news concerning Cohen. He is still not eating enough to show weight gain. He is such a laid back baby; it takes him thirty minutes to eat when it should take fifteen minutes.

I really thought he would be home by now, but we continue to wait. Brad is taking off the next two weeks so I am hoping he comes home soon.

Mom and I took Nora to the zoo. Seeing her laugh and smile was the medicine I needed. I will keep everyone updated the best I can. Thank you for your continued prayers and support!!! We are so thankful for amazing friends and family!!!

Weight gain...

Well he took all his feedings by mouth for 24 hours!!! Go Cohen!!!! BUT he has not gained any weight :(

We are thankful for him eating, but he still has to eat more so that he can show weight gain. Originally the dr wanted him eating every three hours. Dr changed orders so that Cohen can eat every 3-4 hours, depending on when he wakes up. Dr. Bass also ordered another EKG to check the hole in his heart and confirmed it is still there. We are not worried about it at this point since lots of babies have holes that correct themselves.

We are hopeful that he will be home by the end of the week; but again no one can tell us for sure. It's all up to Cohen (his eating and weight gain). Brad and I have learned over the past two years that when we make plans, God's plan ALWAYS trumps our plans :) Therefore we are TRYING to not make any plans and just go with each day :)

25 mL to go...

Cohen continues to improve a little each day.  His respiration is averaging around 64 breaths per minute; so thankful that he is under that 70 mark. The only thing holding him up now is his eating. He has to take all of his feedings by mouth for 24 hours before he will be released to come home. Yesterday he would take every other feeding by bottle, but would only take around 50 mL. Due to his "big boy" status (i.e. his weight), he has to take 75 mL. Nora had to take 60 mL...it just depends on the child's weight. He doesn't wake up for his feedings because he is so tired from eating. Last night, Brad and I ALMOST had him take a full bottle, but he fell 5 mL short. We did EVERYTHING we could to keep him awake; we even sang "Eye of the Tiger" from Rocky, to encourage him to stay awake and eat....it didn't work :(  When I talked to the nurse earlier she said last night he would take about 50 mL and then pass out asleep, which means she had to tube feed him the last 25 mL.

This doesn't really surprise me...everyone in the medical field calls white boys, "wimpy white boys". For some reason, they have a harder time catching up if something goes wrong early on (i.e. born premature, respiratory distress, etc.). I keep telling Cohen he is going to have to "man up"; all the little girls in the NICU are getting discharged before him. We still don't know a date on him coming home. It all depends on his eating. A new doctor starts today, Dr. Bass. He was one of Nora's neonatologists as well, and we are very comfortable with him. Brad is at work this week and is going to take off two weeks once Cohen gets to come home. I know he is ready for a "vacation", if you can call time at home with a newborn that :)

Nora started a new day care today that is located 7 minutes from our house!!!! I was driving 60 miles a day to and from Sevierville to take her to her school each day. While it was hard leaving Hilltop Child Development (they have been like a second family to Nora), it was something we had to do. Brad can now take her and pick her up without having to drive an hour out of the way to get to work. He and I dropped her off this morning and she didn't even cry! Praying she has a good day at her new school!!  Nora got to see her brother for the first time yesterday (through the glass that is). She was cute looking at him! 

Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

~ Romans 2:2-5

Working on eating

This is going to be a short post....

It's really hard to write an updated post when a certain little girl tries to push all the keys while I am typing... Therefore I am posting from my phone. (Nora is definitely feeling better!!)

Cohen took three feedings by mouth last night!!! His respiration is averaging around 64; so thankful that his breathing continues to improve. He did have two tube feedings today; nurses think he was just worn out from the overnight bottle feedings. He also got circumcised today.,.more steps in the direction of coming home!! Praise God!!

IV Out!

Yay! Cohen got the IV out today (the one that was located in his head)!! This is good because it means he has received his last dose of antibiotics; and it makes it a lot easier to get him out of his crib and hold him. I am sure he is more comfortable as well; can you imagine a needle in your head? Last night, they removed his nasal canula, and he has been breathing on his own..still breathing too fast, but a step in the right direction. Dr. Anderson ordered for him to be moved to an open crib, which is another step in the right direction. One of the things he must do before he can come home is maintain his body temperature. When I left him earlier, they had just moved him over. He continues to "eat" with a feeding tube because his respiration is still over 70 breaths per minute. Once his breathing rate decreases the doctor will start him on bottle feedings (with my milk) or if I am there I will be allowed to nurse him!

He is an oinker and is taking 65 mL (about 2 oz.) every 2-3 hours. His digestive system and excretory system are handling the feedings well, so that is another huge blessing. The nurse informed us last night, that he is back at his original birth weight of 7 lb. 12 oz.; she said that is great for him to already be back there only six days after birth. The fact that he continues to improve is such an answered prayer. I asked Dr. Anderson if he would do another X-ray to check his lungs and he said no, since he responded so well to the antibiotics. Still do not know when we will get to bring him home...just waiting for that breathing to slow down so that he can eat.

Nora slept better last night and is hopefully over the worst part of the hand, foot, and mouth disease. The blisters are still there but her fever has come down. She is still not eating/drinking well due to blisters in her throat. Praying that she continues to improve and get back to her old wild self!

We are thankful that the Lord is answering our prayers in His time and not our time. He is good!!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.- Jeremiah 29:11

Guinness Book of Records

There has not been much change in the past 24 hours for Cohen. He is still breathing too fast (he is averaging more than 70 breaths per minute). Tomorrow is his last day for antibiotics so Dr. Anderson will be reassessing where to go next on Saturday. While being home is a blessing, it is hard because we don't get to see him as often. While we were at the hospital it was easy to just go down an elevator and visit him. Now that we are home, our visits have had to decrease. We get to go 2 times a day (once in the morning and once in the evening). During the morning visit, we usually get to meet with his doctor, and I get to let him nurse a little. Dr. Anderson does not want him nursing too much though, due to his breathing being so rapid. If he drinks too much milk, and spits it up he could aspirate. Some people have expressed a desire to see Cohen in the NICU, and I can't blame you because he is so much fun to look at. However, due to our not getting to see him much, we are being selfish, and requesting that time for Brad and I to visit with him, his doctors, and his nurses. I should put that the selfishness is more my selfishness due to changes my body and emotions are going through.... 90% of women experience what are called the "baby blues". The "baby blues" are a variety of symptoms affecting new moms. These symptoms include weepiness or crying for no apparent reason (wish that was limited to pregnancy), impatience, irritability, restlessness, anxiety, fatigue, insomnia sadness, mood changes, and poor concentration. I am currently experiencing several of these symptoms at this time, and am doing my best to cope. Its even harder not having Cohen at home and going through these emotions. I am so thankful to have such a supportive husband who could not be more understanding, and is doing an AMAZING job of putting up with me!

 I PROMISE that once we are home and settled we will be opening our home to all Cohen's family and friends to come and visit. I truly appreciate everyone's understanding with this; Brad and I cannot wait to show off our little man once we get him well!

So I know the blog is called "Cohen's Progress", but today's update focuses more on Nora. As everyone knows Nora goes to daycare five days a week (yes, my child is a day care baby). While day care has been great for Nora and her development, one of the downsides is that she catches EVERY form of bacteria and virus that our world has to offer (okay, maybe I am being a little sarcastic). But seriously, most of you know that Nora has stayed sick this first 18 months. The good thing is she never gets the same virus/bacteria twice.  I seriously feel like we are shooting for the Guinness book of records for, "how many doctor visits can your child have in a year". When mom picked Nora up on Tuesday and brought her to the hospital to visit, I could tell something was not right. She was running a mild fever and just not acting like herself. I was hoping it was teething, but by the next morning, knew it was something more. Nora has her first (and hopefully only) case of hand, foot, and mouth disease. She is running a low-grade fever and has broken out in blisters on her face, arms, and feet. Unfortunately some of the blisters on her face are also in her throat. We have kept her home the past two days hoping that this virus (that's right virus, not antibiotics to knock this one out) will run its course and move one. I am still struggling (emotionally) with not being able to scoop her up in my arms and console her. Today, she was standing on the floor with her arms reaching out to me, and all I could do was look at her. I am not allowed to pick up anything over 7 pounds at this point...I very quickly moved to the couch where my mom was able to put her in my arms.

One of the worst parts of this virus is that it is HIGHLY contagious. Add that into trying to bring a newborn home and we are looking at a recipe for a disaster. We are in the process of sanitizing every surface in our house and washing EVERYTHING!  Thankfully mom is here and is able to give us an extra set of hands to accomplish this lengthy process. This all falls back again on God's timing. If we had brought Cohen home yesterday, when we were discharged, more than likely he would have caught this virus. Thankfully the Lord knows what is best for His children, and Cohen is tucked safe in the NICU where this virus cannot get to him. Nora's pediatrician has actually referred us to an immunologist to have her immune system checked out. She wants to ensure that Nora does not have an immune disorder or allergies. Her pediatrician feels very strongly that she is just "unlucky" and tells us all the time, "she will be the healthiest 5 year old you have ever seen". We are praying this is the case :)

To say that I am grateful for everyone's continued support and prayers is an understatement! I know with all of my heart that we would not have gotten this far without them...if you could now add healing for Nora as well we would truly appreciate it!

Pre-sickness- loves playing at the splash pad and a refreshing popsicle to finish off the day

Working on Eating

Yesterday we got to hold him for the first time since he was admitted to the NICU. Dr. Anderson ordered his central line to be taken out, therefore we were able to get him out of the incubator (that is what Brad calls it). All of the nurses keep commenting on what a big boy he is. I guess in the NICU they are used to small babies and Cohen is a very "dense" boy as one nurse put it. Others call him a chunker :)  He has back hair and it is so funny, because he does look like such a little man!

The afternoon nurse was unable to get a feeding tube down his nose, due to swelling from where he had the CPAP. So they put it in his mouth and started him on lipids (looks like straight fat) which he is doing really well with. While we were there visiting, he was playing with the tube in his mouth the whole time. He is using a pacifier and has the sucking reflex down. This is exciting to me, because it took Nora a while (due to being premature) to know how to suck, swallow, and breathe. They put another IV in his head in order to administer his antibiotics as well. His feeding tube is allowing him to get my milk which is very good for him at this point! (And it makes me feel like I am doing something that a mother should be doing)

Dr. Anderson ordered for his oxygen to be turned down even more (20%), and hopefully he will be on room air in the next 24 hours. His respiration (breathing rate) continues to be higher than we want at this point. But it is steadily going down, so that is good to know that improvement is taking place. Dr. Anderson said he is improving in every way, and still says all the "puzzle pieces" say some sort of infection was in his lungs even though we may never know what it was (thankfully the blood culture still is not showing any bacterial growth). Looking back at it all, I am so thankful that we were in the hospital and the doctors and nurses were able to catch this infection in Cohen's lungs. If we had been at home, we may have hesitated in taking him to the doctor thinking it was just him being a newborn. Again, I am reminded of how perfect God's timing is (even if I can't see it at the time)!

I got discharged today and got home about 2:00 p.m. It feels so good to be at home with Nora, who we have been missing terribly. Her and Brad are already back to playing and chasing each other around the house. Hearing her laugh and smile is the best medicine ever!

We still do not know when he will be coming home. I do not want him home too soon. I want him healthy in every way before he comes home; otherwise, I will be a nervous wreck. Prayers will continue for our sweet man to heal.

I knew you before I formed you in your mother’s womb. 

~ Jeremiah 1:5