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My NICU Experience

My name is Amanda Long. I am new to the whole blog world. The reason why I am starting this blog is to be encouragement and try to provide support with whatever you maybe facing with NICU or if your little bundle of joy is home with you. I am going to give you a little insight to my experience at the NICU with my daughter. Here goes: My daughter Bella was born in February of 2015, her due date was in May 2015. NICU life was hard!  It took forever for us to find parking at the hospital. When I would get to the floor where the NICU is I had to wash my hands up to my elbows before I could enter to prevent any germs.  The nurses had the most respect when I would ask if I could hold my daughter. I only had an hour to hold her at first until she move further down the NICU to room five because she was hooked up to so many machines when she was first-born. The staff would tell you that you had to leave at a certain time so they could do feedings. Breast feeding was hard because my supply was low due to all the medicine I was on due to my blood pressure. I was the mom that wanted to breastfeed so bad that I tried everything that the lactation nurse suggested and my milk still didn’t come in. My daughter was in the NICU for a total of 71 days and of the 71 days we only missed one day to see her but I called up to the NICU everyday just to check and see how she was doing. If it wasn’t for my faith in God, my husband, my families and my church faith-family I don’t know that I would have been so strong while she was in the NICU. I will admit that I had my days where I would cry my eyeballs out because I couldn’t take her home with me just yet or days when I couldn’t get any of my breast milk to her where I felt like I was a failure-that I was letting her down.

Present Day

Today my daughter is twenty-nine months old (2 1/2 years old). She is healthy as can be other than the normal common cold left and right. She had her first seizure after the last real bad virus she had caught, it scared my husband and I to death. She has three therapist that comes to work with her to help her get caught up where she should be. She is a little behind in speech, gross and fine motor skills. She is your normal two-year old getting into everything and curious about everything. Her favorite show is Mickey Mouse Clubhouse. I just wanted to give you my testimony of how my daughter had to fight for her life when she was in the NICU and now she is the sweetest little girl.

 

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Catching Up

Hello everyone, sorry it has been a while since my last post. Life has been a little crazy. How is everyone doing? I just wanted to catch everyone up on how I’m doing and my little family is doing. Since my last post my daughter is three years old (some days feels like she is going on thirteen), she is back for half day preschool. Isabella’s speech is getting so much better. We are starting to sing songs together and read books together. She is getting better with potty training. During Easter of this year she had a little episode of a seizure and then in June of this year she had two back to back due to a high fever. (She has had high fevers before but has never had a seizure with it.) She has been having follow ups with her doctor and they couldn’t explain why she is having seizures. They did say that they weren’t going to put her on any medicine until she was to have another seizure. That day I felt like my heart was in my throat because there is nothing I can do except pray for her and to keep a close eye on her.

At one of my daughter’s doctors follow up appointment I found out that she was considered obese for her height and age. Hearing that hit me like a ton of bricks for starters when she was born she was only 2.8 lbs and according to her car seat she could not be front facing until she reached forty pounds. Isabella is a helathy eater she doesn’treally care for junk food. This is what we did to help her (myself included) continue the fresh fruit and veggies, cut back on snacks (even though they were healthy), no juice-she loves water, we take thirty mintue walks and we give her a special treat once aweek. The first week of Isabella’s fall semester she had to miss four days because she had a virus where she had a fever that wouldn’t go down even with medicine and during the course of that virus she had lost four pounds. Now she is on target with her weight. With us having to adjust with she eats has helped me on my weight loss journey. She is my walking partner days I don’t feel like walking she asks if we can go and we do.

Over her summer break we did something different every day and had outings. We went to our local zoo twice a week, had playdates, still had her in home therapies, children’s museum, did crafts, swimming and some cooking.

Hope everyone has a great weekend. God bless.

Mom Guilt

Hello everyone, sorry it’s been a while since my last post. I hope that everyone had a wonderful Easter at church, with family and friends. I just wanted to get you caught up on life with a busy three-year old. For starters we celebrated my daughters third birthday at Chucky Cheese’s. She loved it. Then the following week she started preschool. Dropping her off a preschool has been a little challenge because she would either cry the whole way there or cry whenever the teacher comes to get her out of the car. She would cry mama hold or dad duh hold. She has missed a whole week and one day of school so far due to her get sick and her allergies on top of being sick. Now, going to school isn’t as heart breaking because now when the teacher gets her out of the car she looks forward to going: she will say bye-bye dad duh and blow kisses. She gets therapy while she is in school and she still gets the ones that come to the house. Potty training is a hit and miss right now she has days where she want’s to use it and other days where she boy cots it all together. Time really does fly when you’re having fun! I have been helping a lady from my church for a little over month or so now. I have the mom guilt when I leave to go help the lady I help take care of because I feel like I should be home working with her on her homework that her therapist that come to the house gives us and working on potty training. She is like a sponge wanting to learn and do so many things. On the days that I don’t go help the lady I make it a family day or a mommy daughter day. For instance on Tuesday this week after she got out of school we all went to Ed-venture children museum. We all had a blast, yes even my husband and I had fun. We let her play in the upstairs room that’s designated for her age group and just let her run to her heart’s content: up and down the tree house, slide, and played in the boat. Then we worked our way down stairs: grocery store play, fire truck play. My husband and daughter played a hole of putt putt and then my husband and I played checkers and connect four together. After we left there we came home did yard work while our daughter took her nap.

Have you ever experience mom guilt? Example: when leaving the NICU and you have to leave your little miracle there? Trust me I’ve been there. I hated having to leave my daughter there every time we had to go. If you have how are you handling the mom guilt? How I’m dealing with mine is on the days that I’m home with her I try to make them as fun and interesting/excited as I can. Because I know that down the road that she might remember what we did. I just wanted to encourage you that it’s completely normal to have mom guilt. That its okay to have some time for your self whether it’s to help a someone else, go to work somewhere, get nails down, play BINGO, or massage etc. Remember you are a great mom and that you are doing everything you can for your little one. I hope you are having a wonderful week and a good weekend. Feel free to leave a message if you would like, would love to hear your feedback. God Bless.

Sowing and Reaping

Good afternoon everyone, hope everyone is having a great week so far. Sorry it has been a while since my last post life has been a bit crazy. Over the last week or so, I have been helping a lady from my church, getting everything ready for my daughter to start pre-school after she turns three next week (wow time fly’s by so quickly seems like yesterday we just brought her home from the NICU.), keeping up with all her in home therapies, trying to keep up with bills, and the house work; trying to work on Bella’s homework from the therapists, and everything else I do. As you probably know or not know I strive to be the Proverbs 31 women as most women probably try to do. It is not easy balancing everything I do. I want to be the woman who God wants me to be so that I can be that role model for my daughter. So that, when she is grown and has her own family she can see how to become the woman God wants her to be. Part of the Proverbs 31 woman talks about how she brought her food from a far: garden, or from different grocery stores.

During this spring season, I am going to try to plant a little garden. So that I can begin the process of teaching my daughter about sowing and reaping. The little seed that you plant will become a beautiful vegetable/fruit/herb/flower. In order to see that growth and beautiful produce you have to water it, make sure it has the amount of sun it needs, and give it some love, and it may need some pruning a long the way. During church today at offering time: we were asked this question “What are you believing for?”-health, finances, wisdom, your child to come home from the NICU earlier then what the doctor is telling you etc. While you are praying and believing you don’t want to doubt, waiver, and the most important thing to do is wait. The potential of your seed that you plant whether it’s an actual seed (vegetable/fruit/flower) or seed if wisdom, financial, peace, salvation for family members, or your children etc. is a force. You want to keep that seed growing so that you can see the full potential that it has. You don’t want to keep a seed a seed do you? If it stays a seed then it will never get to the potential that it is called to have. Like us we are called with the seed of potential to do something great with our lives. God has called us to do it. He wants to see the full potential that he has given us to come to life. But if we don’t do anything with the seed that He has planted in us then it will never flourish into that beautiful blossom.

With all that said I just want to encourage you that you have a seed of potential; it’s your choice what you do with that seed of potential.

Pleasant Surprises

Good morning everyone, wow it has been a couple of weeks since my last post. We have had a lot going on around here. For starters we started trying to potty train our daughter: found out that it takes her about 30 minutes to use the bathroom on her potty. We came to the conclusion that she’s not really ready yet. Also, our daughter’s favorite early interventionist put in her two weeks notice. Friday was her last day and we did a visit at the zoo. Bella speech therapist had to cancel last week which was kind of relief because it gave us a chance to breathe from having people coming to the house. I have started trying not to cook two different meals: Bella is doing a little better with her chewing. We have been trying to get things in order for Bella when it’s time for her to start preschool after she turns three. I have been helping my husband out with applying for jobs. Over the course of the weekend I have been blessed with pleasant surprise from the Lord: I went to a get together that a friend from church had: I got surprise with a shirt for me and one for my daughter. Then on Sunday morning we had a wonderful service at church I was supposed to be there on Sunday. A lady at church surprised me with a little rocking chair for my daughter. (Bella loves to rock.) The same morning during church I got surprised with another shirt. Also, got the chance to find out that a lady needed someone to sit/help her for a little while during the week. All I can say is what an awesome God I serve. My pastor at church got a word from the Lord for our church congregation that pleasant surprises are coming in 2018. We are also trying to plan our daughter’s third birthday party. So, my plate is kind of full now. I am trying to prioritize my time better now so that I don’t neglect any area of my life: especially when it comes to making my quiet time first thing in the morning, my husband and daughter; and everything else comes after those three things.

Last night my daughter didn’t sleep to well. I’m not sure if she had a nightmare or if it’s because she kind of has a stuffy nose. She woke up around 1:00 a.m. I had just started dozing off, we had went to bed around 10:30. I had my prayer time before I fell asleep. When she woke up she started screaming like it was a nightmare. She wouldn’t let me change her diaper, so I rocked her in her room for a little while before she let me change. I finally got to change her diaper and then I rocked her some more and sang to her. I did this for about 30-45 minutes, I tucked her in her crib told her to go night night. She was quiet for a while, then she started having a crib party, after that she started crying again. I waited for a while like an hour or so to see if she would go back to sleep on her own. She didn’t. Don’t get me wrong here: she wasn’t crying the whole hour she was going back and forth from crib party (talking to stuff animals) to being fussy. This went on until about 2:00-2:30 a.m. I got up and rocked her again for a little while then my husband got up. Bella said dad-da hold. So, he came in held her for a little while and then tucked her in bed for the rest of the night. She was quiet for a while, talked just for a little bit. Next thing we knew it was peace and quiet. She finally gave up and went back to sleep. I got up this morning around 7:30 made some coffee and had my quiet time, watched the news, and now as I’m typing I have Joyce Meyer teaching in the back ground.

This week is kind of busy: today I get to sit with the elderly lady for couple hours, and Bella’s occupational therapist comes; not sure what we have going on Wednesday other than church service at night; Thursday: Bella has her speech therapy session and then her evaluation for preschool to see if she qualifies for the therapy while she is at school. Friday not sure what we have going on. Some time this week we are going to trying to see both sets of grandparents and go up to the NICU so I can pick up my prayer request cards and take the goody bags for the month of February.

In closing this post: I just wanted to encourage you to look for the pleasant surprises that God has for you in 2018. If you have a busy schedule like me make sure you prioritize what’s most important to you first. Keep Christ in the center of everything and then everything else will fall into place. I hope you have a blessed day and I will talk to you shortly. What do you do to prioritize your day? How do you handle a busy day?

Stressed Out Mama

Hello everyone, it’s been a week since my last post. It has been a crazy but good week this past week. First of all I started a 21 day prayer and fasting with my church last Sunday. On Monday I started back taking care of me: I started doing my weight watcher points on my own. I also started back walking. The rest of the week Tuesday and Wednesday were housework and errands. Thursday was a busy day for Bella: she had all three of her therapist came to the house, started at 11:30-4:30. Bella had her speech therapy first: it actually went pretty for the first time in a while. Second her early interventionist came and we did her evaluation. During this time Bella took her a good nap. While we did her evaluation we came up with about a dozen goals we together as a family can work on with Bella, some mommy daughter things and some father daughter things. After her early intervention came by Bella’s mama gee and poppy came by for a little while. When they left, Bella’s occupational therapist came. Bella wasn’t cooperating  very well because she had just woke up from her nap and she already had a busy day. Friday was a relaxing day making up from busy Thursday, Bella and I went to go visit her me-maw for a little while. Saturday we went to the NICU to pick up the prayer request cards that I placed at the front desk so the moms can fill them out if they need prayer. Today we went to church: had a powerful service, then we had a fellowship meal at church after service, came home took a nap, and then went back to church for Women’s Ministries.

As always when it comes to her therapies there is homework. For instance: speech homework involves using her nuk brush: rubbing the inside of her gums which produce stimulation in her mouth to help with chewing, practice biting on the brush to provide strength in her jaws; early intervention homework: just to start working on a few of the goals we made; occupational therapy homework: pulling and tearing play dough/puddy works on fine motor skills, coloring/pre-writing skills which also works fine motor skills. As you can tell this coming week we have a lot of homework to work on.

I just want to encourage you all that no matter the craziness of life the God will meet you right where you’re at. During the service today our pastor shared about the altar. You can make an alter anywhere: in your room, outside, etc.It’s a place where you can meet with God and be alone with Him. I hope that this will encourage you that whatever you need go to God and meet Him at the alter. This is what my pastor shared with the congregation:

At the Altar:

  1.  It’s where God meets man.
  2. It’s where sacrifices are made-if something isn’t dying it isn’t a sacrifice (your flesh, hiding sin, etc.)
  3. It’s where the Glory of God revealed
  4. It’s where you find unmerited Mercy.
  5. It’s where Miracles takes place.
  6. It’s where surrender takes place.
  7. It’s where burden’s are lifted.
  8. It’s where restoration can be found.

The service hit me today where I needed to be hit, in a good way. I believe and have faith that with God all things are possible. But today, I let the devil seek in and he fed me lies: like my circumstances will never change. I meet God right at my seat got down on my knees and I laid everything out in tears to God. I know that my God can and will change my circumstances. I know that He can do it for me, so that means He can do it for you also. Hope you have a blessed night and a good week.

Love, Amanda

Follow Your Heart

Hello all, hope everyone has had a good week. It’s been a couple of days since my last post. I just wanted to let you all know that it has been a cold week here in South Carolina. The air is dry, which isn’t helping my daughters cold and runny nose. Back to this week: Saturday was organize whole house day and take down Christmas decorations. Sunday was new year’s eve I had nursery in the morning and then we all just had a relaxed day. Monday new’s day was laundry and football. Tuesday and Wednesday were pajama and movie days. Thursday Bella had speech therapy: I got more homework to do now we have to write down everything that she eats so that her therapist can tell how her chewing is going. Today, Friday was our outing for the week. We haven’t gone anywhere this week because it’s been so cold.

cold weather

Tomorrow we are going to the NICU to pick up the prayer request cards that I put out for anyone that has prayer request at the NICU. I pray over them and then I get my church faith-family to pray over them. Its something that the Lord has laid on my heart to do since my daughter was in the NICU, I just didn’t know how to go about doing it. Until one day I worked up the courage to call the NICU phone number that I had when my baby girl was in the NICU. All I had to do was ask if it was okay if I could put prayer request cards up at the front desk; they said that they have never had anyone do that before. I feel so blessed that I’m able to help the moms that have little ones in the NICU just by praying for them.

I just want to encourage you that if you sense or feel like the Lord is wanting you to do something step out in faith and do it. When you do finally step out and do it, you have so much joy and peace. I get so excited when I go to the NICU to pick up the prayer request cards. When I first started I was nervous that all the emotions would hit me just walking back down the hall, through the doors, and washing up but the Lord filled me with peace and bubbles of excitement that I didn’t even think of my emotions. I was just happy being able to help others. The best part of it all is that you are glorifying and pleasing God by doing what He wants you to do.

Happy New Year 2018

Hello everyone, Happy New Year. It has been a couple of days since my last post. Let me get you caught up from the last post: my daughter is still sick, her therapies have been canceled due to Christmas and New Years (which gives us a break to work on all the homework they give us and gives me a chance to get the house organized). Bella is starting to talk a little more; using the words she knows real well with combining them with other words she has been picking up. Bella is chewing her food better while she eats. My husband and I are so proud of her and to see how far she has come from 2015 being in the NICU for 71 days to a full-fledged two-year old.

happy new year

In 2018, I am expecting great things from God to happen in my life, my marriage, my daughter, my husband, in my church faith-family, and all the other people in my life. I just wanted to share some of my new years resolutions with you:

  • As a mom
    •  Start teaching her about Jesus (reading devotionals on daily basis again, watch veggie tales with her, and pray with her)
    • Set a better example of eating healthier (she eats her veggies-I need to cook more veggies than just the ones I know that she will eat.)
    • Make her feel special every day
    • Try to start potty training
  • As a Wife
    • Pray for my husband daily
    • Lift my husband up when he is down
    • Pray scriptures over him
    • Try to do something special for him once a week of some sort
    • Speak positively towards him
    • Help him whenever he needs help
  • For Myself
    • Make it a priority to have my quiet with the Lord every day
    • Try to get healthier: lose weight, eat better
    • Do more things for myself: nails, read a book
    • Quit being hard on myself on certain things
    • Try to keep house clean and organized

What are some of your resolutions for the new year? As a mom? As a wife? For yourself? I hope that you have a blessed 2018 and that you stay expecting for God to do something throughout the year.

Love, Amanda

Our Christmas Journey

Hello everyone, I hope everyone had a wonderful Christmas. We had a pretty good Christmas. I couldn’t complain. My daughter woke up early Christmas morning around 3:30-4:00 ( She is still sick.) I got up with her, changed her diaper, and rocked with her. While I was enjoying our snuggle session, I told her the story of Jesus from his birth all the way to his resurrection. I know that she probably doesn’t fully understand yet what exactly I’m saying but you can never start to early sharing the Gospel with your children.I also sang a couple of songs to her. She went back to sleep. My husband and I got up a little after 7:30. I made a pot of coffee. After the coffee started brewing we went to go wake up our daughter. We had to tell her go see what Santa brought you under the tree, or she would have wanted to stay in bed. I took her out of her crib thinking that she would run to the family room so see what all Santa had brought. I was wrong, she plopped her bottom on the floor and started to cry. I picked her up and we went to the family room, it didn’t take her to long to see all the toys that Santa had brought her. We opened up gifts, she was only into opening up a few gifts then she got tired. After we had our family Christmas here, we left and headed to mama gee’s and poppies house to have Christmas there. She opened her toys first: little stack able blocks that you can also use as stepping-stones, her cleaning set and then her favorite toy of all her choo-choo (you make it with legos). After she opened her toys, she was too tired to open up the rest of her gifts. After we left there, we came home. Bella was able to take her a good nap. I was able to put up some of her Christmas. My husband and I were able to put up her new baby gate that she can’t open yet. Hooray! No more army crawling underneath the old baby gate! After she woke up from her nap, we got ready to head over to me-maw’s house to have Christmas there. We had a nice dinner and opened up our presents there. My favorite part of the day was when we were on the way home from my moms (me-maw’s) and we sang Happy Birthday to Jesus as a family. Once we got home, we brought all the stuff in and got Bella settled into bed. After she was settled and in bed, my husband and I went through everything we got. We started putting some of it away and went through what bags/tissue paper we wanted to keep for next year. I can say it was a good day and it was a long day especially when your little one is still not feeling good. I hope everyone had a good Christmas. I pray that you will have a Happy and Blessed New Year!

Speech Therapy

Hello moms, this week during my daughter’s speech session it was a co-treat with her early interventionist. During the session we worked on ways and techniques to help my daughter chew her food. Isabella has been chewing her food twice then mashes it up to the roof of her mouth like she use to when she was little. We have found out the reason behind this is because she is under stimulated in her mouth. The speech therapist  gave me a chewy tube and a Nuk brush. She showed me how to use the brush to message the side of her mouth doing this helps stimulates her mouth. She showed me how to use the chewy tube to help her bite. Using the chewy tube helps with her biting on the side right now Isabella boy-cots biting on the side and bites mainly with her front teeth. So, our homework for this week is adding this to our routine twice a day and finding different textures of food: soft, hard, and medium for chewing.

I just want to encourage anyone that may have a little one that is struggling with the same issues or that is having speech therapy. It takes a lot of work but they will get there. If you and your other half put in the work and do the homework you will see them progress. I try to pay close attention while all her therapist are here to see how they play with her and the different techniques they uses to work with her. I just want to encourage you not to give up and stay strong. Keep your head up and watch how they blossom.

Seven days til Christmas

Hello everyone, it’s been a while since my last post. For starters I can’t believe we have seven days until Christmas now. Let me catch you up from my last post. As part of the 25 days of Christmas countdown: we have made salt dough ornaments, gave Christmas cards to our faith family at church,  gone to two Christmas parties and a Christmas program. I went to a Christmas dinner with my Aunt and Uncle at the beginning of the month. We have been watching Christmas movies together as a family. I think our favorites are: Santa Claus, Santa Claus 3 (with Tim Allen) and Dr. Seuss’ How the Grinch Stole Christmas. We also took her to see Santa.

It has been crazy the last several weeks. My little girl has been sick again. Last Sunday December 10 we had to take my daughter to the emergency room back when she was running a high fever 104.3. We were worried that something was going on because she has never ran that high of a fever before. We were also worried that because it was climbing up that it might cause her to have a fever. Well, when we were there they did an x-ray because the doctor heard something in her lungs. He wanted to make sure that it wasn’t anything to worry about. They also did a strep test and both of them came back negative. We were both surprise because when the doctor examined her she showed all the signs that she had strep. All I can say is Thank You Jesus! You’re our Healer! We found out that she just had another viral upper respiratory infection. She is back to her normal crazy self.