Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts

Monday, December 21, 2009

Benjamin's Birth

I lost 2 babies in the fall of 2007 and when I got pregnant again in 2008 I was excited and scared to death.  The 2 losses the year before were devastating and I was terrified that I would lose this baby as well.  Because of Caleb's Spina Bifida I was considered "high-risk" so I had tons of sonograms.  We learned early on that I had Placenta Previa which is when the placenta is covering the cervix.  Most of the time the placenta will move up during the pregnancy and there is no reason for concern.  So we hoped and prayed that my placenta would be cooperative and move off the cervix.  Well it never did.  At 31 weeks and 5 days I woke up in the middle of the night, around 3 am, because something just didn't feel right.  I got out of bed and quickly realized that I was bleeding...quite a bit...not a good sign!  So Glenn rushes me to the hospital.  I really appreciated that we have a hospital about a block from our house.  I was so scared, I just remember shaking from head to toe because I didn't know what was going to happen.  The plan was to put me on hospital bed rest for as long as possible to give the baby more time to grow.  I was transferred to another hospital and I prepared for a nice long stay.  Well, my placenta had other plans and things just went downhill fast.  I started hemorrhaging a few hours later and it quickly became an emergency situation.  Glenn and Caleb were in the room with me when it started and I was trying so hard to keep it together so that Caleb wouldn't be scared.  But I knew that something was very wrong so it was a struggle to not completely freak out.  It's very unnerving when there are several nurses and doctors rushing around you, especially when even they seem a little freaked out!  I had to have an emergency c-section, there wasn't time for a spinal block so I was put to sleep for the surgery.  When I woke up I was told that my son was doing well at 4 pounds 7 ounces. One of the first things I remember was Glenn telling me that the baby's name was Benjamin David (we hadn't decided on a name-we thought we had more time to decide).  Benjamin David was the name that I wanted so I was thrilled to hear that Glenn had decided on that name.  
I was also told that the doctor had no choice but to do a hysterectomy.  It  appears that the placenta went absolutely crazy and had grown outside of the uterus and had attached itself to the abdominal wall and my bladder.  My uterus was so badly damaged that they had no choice but to remove it completely.  There was some damage done to my bladder as well so I had to wear a catheter for 10 days (that is no fun, I don't recommend it.)  I also had a blood transfusion because I lost so much blood.  Despite all of that, our baby boy was doing well.  He did have to have some oxygen for a few days just to give him a little help but other than that he was healthy.  He looked so tiny to me.  Benjamin spent 5 weeks in the Neonatal Intensive Care Unit.  
 Look at that sweet face.

 This is one of my favorite pictures of Benjamin while he was in the NICU.  He did a lot of sleeping during those 5 weeks.


 So that is the story of Benjamin's arrival into the world.  Pretty exciting stuff, right?  In some ways those days with him in the NICU seem like they were just last week, and sometimes it feels like we have always had Benjamin with us.  It's hard to picture our family without him.  I may not be able to have any more babies but I feel super blessed to have the 2 wonderful boys that I have.

Tuesday, October 27, 2009

Caleb's Story

In the summer of 2004, Glenn and I decided it was time to start a family.  I had actually been ready for a baby for some time but Glenn wasn't quite there yet.  I was thrilled when he said he was finally ready and I immediately made a doctor's appointment, got off the pill, and started taking prenatals.  I was ready!
In December of 2004 I got pregnant!  I remember seeing that faint pink line while standing in my bathroom and I just cried and cried.  Absolute joy.  I took 3 more pregnancy tests just to be sure!  There was no doubt, I was pregnant.

Somewhere around 15 weeks, I went to the doctor to have the blood work done.  I didn't think anything of it, it never occurred to me that something could be wrong.  The blood work came back "concerning" so I was sent to a perinatologist for further testing. I was about 17 weeks pregnant when we found out that Caleb had Spina Bifida and Hydrocephalus. I remember sitting in this little office with Glenn and the "genetic counselor" came in with this book and she turned to the section on Spina Bifida and read aloud to us. It was such a blur, like everything was happening in slow motion.  The doctor did an ultrasound and showed us the opening in Caleb's spine and how the ventricles in his head were enlarged.  He told us that our son would likely have significant cognitive delays, would not walk, have no quality of life and might not even survive.  And in the next breath, he offered termination.  We were offered termination several times and repeatedly told that we had to make the decision quickly because I was almost halfway through the pregnancy.  Well, that was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. I will never forget March 22, 2005.  I felt like my world was falling apart. I remember sitting on our couch, just sobbing and telling God that I couldn't do this, that is wasn't fair and that I didn't want this for my baby. I was mad at God for about a day and then I realized that I needed Him more than ever and that there was no way I could deal with this without Him. People always say that God never gives us more than we can handle, but I don't think that is true. I think we are often faced with situations or circumstances that we can't deal with, at least not without Him walking beside us and sometimes even carrying us through it.

Caleb was born on August 9th, 2005. I had a scheduled c-section so all the necessary medical professionals 
were ready to meet Caleb's needs. I didn't get to hold him, I only got to see him as they wheeled him by me. There is something so unnatural about that, not getting to touch this life that has been in you for 9 months. Caleb had his back closure and shunt placement when he was only 6 hours old. Poor Glenn had to deal with that pretty much on his own because I was recovering from my c-section and pushing that morphine drip button every chance I could. Caleb was in the NICU for 13 days. Probably the hardest 2 weeks of my life up to that point. Glenn and I would spend 7+ hours a day by his bed, talking to him and holding him. I hated everything about him being in the NICU. I hated feeling like I had to ask permission to hold my own baby. It was a joyous day when we got to bring him home.

This picture was taken right after Caleb was born, this was the very first time I saw him.

This is the opening in Caleb's back. Some babies with Spina Bifida have a sac that covers the opening but Caleb didn't have that. I was so glad that Glenn was there to get this picture, otherwise I never would have known what Caleb's back actually looked like.

This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity.
 
Caleb's back after surgery.

Caleb's sweet little head after shunt placement. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!

I just think this picture is so sweet.

Finally Home!

So that pretty much sums up the start of Caleb's journey. It is now a 5 year long journey and one that I feel so blessed to be a part of. We have certainly had many ups and downs. Spina Bifida is very complex and it affects so many aspects of Caleb's life, not just his mobility.

Caleb is now 5 years old and he started Kindergarten this fall.  He is doing things we were told he would never do.  He walks with AFO's and a walker.  He also uses a wheelchair because his legs do get tired.  He loves watching NASCAR and Monster Truck videos.  He loves to color and write.  He plays baseball through the Miracle League and he absolutely loves that.  He is a wonderful big brother to Benjamin.




You can't help but smile looking at this boy.  I have days of sadness, times when I feel sad for him.  But then I remind myself that Caleb isn't sad.  He's not unhappy at all.  If he isn't sad, then why in the world should I
be?

 
 Caleb is absolutely amazing and an inspiration to me. I am in awe of all the things that he has accomplished. He absolutely blows me away and brings me so much joy. I thank God on a daily basis for blessing my life and trusting me and Glenn with Caleb. God must have seen something in me that I didn't see in myself because He knew that I could handle this (with His help of course). God gives me a peace that I wouldn't have otherwise. Our lives would be so different if Caleb didn't have Spina Bifida, I can't even imagine things any other way. I think about all the wonderful people I have met that I wouldn't know if it weren't for Caleb. My life has been touched by so many other moms that share the bond of having a child with SB.  I don't walk this road alone and that makes all the difference.

Thursday, September 10, 2009

Two little toothies!

Here is a picture that shows Benjamin's 2 bottom teeth. They are a little hard to see in the picture but they are there. He is doing great. Sitting up well and eating solids better. I'm going to puree some carrots and see how he likes those (he loved the pureed pear).

Glenn took this picture last night after Benjamin's final feeding before bed. I cherish moments like these with him because I know they won't last forever. I can't believe how big he has gotten.

This is Benjamin when he was in the NICU, probably about 4 pounds when this picture was taken. It's hard to believe he used to be that little. Just precious.

Saturday, January 24, 2009

Welcome Home Benjamin

Yesterday was a good day...after almost 5 weeks in the NICU, we finally got to bring Benjamin home. Caleb got to meet his baby brother for the first time. He was very interested in Benjamin when we got home. I quickly learned that we are really going to have to work on "being soft" and "easy touch". Caleb was a little rough at first but I'm sure that he will learn how to be easy. We are so happy to have Benjamin home but the realization really set in last night. It was a "what do we do know?" kind of moment. It's been a few years since we have had a newborn and we are a little out of practice. But we are already getting into a good routine and things are going smoothly...although we are quite exhausted! Benjamin is absolutely precious. He slept on my chest for an hour this afternoon and it was wonderful. So sweet. Thanks again for all the prayers.


Thursday, January 22, 2009

Almost home?

Benjamin passed his car seat test with flying colors last night. Thank you so much for all the prayers...they worked. Unfortunately he still isn't home yet. They want to monitor him for a couple more days. Preemies will often let their heart rate drop which isn't terribly concerning as long as they bring their heart rate back up on their own. Benjamin's heart rate drops occasionally but he recovers on his own, so that is good. I guess the doctors just want to watch him for a couple more days to make sure he is 100% ready to come home. I really thought he was coming home today and I was so disappointed when the doctor said we had to wait a couple more days. So, if all goes well Benjamin should be home this weekend.

Tuesday, January 20, 2009

Feeding tube is out!

Look at that beautiful face! No feeding tube! Benjamin is doing great with his feedings by bottle so they took out his feeding tube yesterday. I think this is the first time I have actually seen his face with nothing stuck to it. He is finally taking all of his feeds by mouth which is absolutely wonderful. He does better with the bottle than he does with nursing but since I am only able to nurse once a day he hasn't had much practice time. That is always something we can work on when he gets home. He weighs in at a whopping 5 pounds 3 ounces. There is only one more thing he has to do before he can come home and that is pass his "car seat test". The doctors want to make sure he can tolerate being in a car seat without his heart rate or oxygen dropping. What they do is hook him up to the monitors and have him sit in his car seat to see how his does. They tried it last night but Benjamin didn't do so good, he only lasted about 10 minutes before his saturation levels and heart rate started dropping. He has to be able to stay in the car seat with no problems for 90 minutes!!! They are going to try again on Thursday so please pray that he does well...so we can FINALLY bring this booger home! I guess being in a car seat can be really hard for preemies, I'm learning that there are a lot of things that we need to be aware of when it comes to prematurity. I finally feel like we are actually getting close to bringing him home but I'm trying not to get my hopes up too much. I won't believe it until Benjamin is actually here. It has been a long 4 1/2 weeks. We so appreciate everyone's prayers. We feel so blessed. God is good. This picture was actually taken last week but I forgot to post it. It's hard to catch him with his eyes open but we were lucky and got a good shot. He's sure is cute!

Tuesday, January 13, 2009

Hurry up....and wait

God give me patience and give it to me NOW! Isn't that what we want? We all want to be patient but we absolutely hate any situation that requires us to actually be patient. Having a baby in the NICU requires patience. I am really trying to be patient...but it aint' easy. Benjamin is doing well. He had some trouble regulating his temperature yesterday so they had to put him under the warmer but he was doing better today. He continues to nurse well and they are trying the bottle twice a day but he struggles with eating even half of what they want him to eat. He is gaining weight, he is about 4 pounds 12 ounces. I have to remind myself everyday that Benjamin isn't supposed to be here yet. He should still be in my tummy for another 5 weeks. If he were still in my tummy he wouldn't have to worry about regulating his temperature, he wouldn't have to work so hard to get food, he wouldn't have to filter all the sights and sounds around him. We are asking him to do things that he shouldn't have to do yet and it is hard work for him. It is understandable why he is so tired and requires so much sleep. I know that he will come home eventually, but not before he is ready. Until then we take it one day at a time and look forward to the joy of bringing Benjamin home.

"Be joyful in hope, patient in affliction, faithful in prayer." Romans 12:12

Tuesday, January 06, 2009

More pics

I don't really have anything new to report. Things are pretty much the same with Benjamin. I did get to nurse him this morning and it actually went pretty well, he did the best that he has ever done. But he wouldn't nurse at all this afternoon. The key is to catch him when he is alert because when he is asleep he won't do anything! It is so frustrating. He has to be taking all 8 feeds a day by mouth before he can come home and he is nowhere near doing that. I know that he will eventually get the hang of it but it is so hard to be patient. We just want him to come home so badly. It isn't natural to leave you baby. Going up to the NICU twice a day is exhausting...thankfully gas is much cheaper these days. Prayers are certainly appreciated.

Saturday, January 03, 2009

Update

Benjamin is doing good. They took him out of the incubator so now he is in an open crib. They will continue to monitor his temperature to make sure he is regulating his body temp. They let me try and nurse for the first time today, which I was very excited about. It didn't go as well as I would have liked, preemies sleep A LOT and it is hard to get them to wake up. Benjamin was more interested in snoozing. They will continue to offer the bottle or allow me to nurse once a day until he gets the hang of it and then they will slowly increase the number of times a day they give him a bottle. He can't come home until he is either nursing or bottle feeding for every single feed. That can take a week or it could take a month, it just depends on Benjamin. Obviously our prayer is that he will quickly get the hang of it and will be home soon.

Wednesday, December 31, 2008

Good Day for Benjamin

Here are some pictures from today. Benjamin is doing great. He continues to tolerate the increase in breast milk through the feeding tube. The nurse gave him a bottle for the very first time today and I was thrilled. I am so glad they are trying to bottle feed and eventually allow me to nurse him. He did pretty good with his first bottle feed, he ate about 7 cc's. It is hard for preemies to coordinate the suck and swallow reflex so it may take some time for him to really get the hang of it. But I was so impressed that he was able to eat what he did on his first try. They are going to try to take him out of the incubator tonight and see how he does at regulating his own body temp. Hopefully that will go well. He was so alert when we went to see him today. He had his eyes open and was just looking around, taking it all in. Then he fell asleep and slept the rest of the time we were there. Glenn and I just take turns holding him. He is just precious and we can't wait to get him home.

Tuesday, December 30, 2008

Benjamin update

Hello everyone, I just thought I would give a quick update on Benjamin. He is doing well and he is absolutely precious. The doctors are slowly increasing the amount of breast milk they give him at each feeding, and he is tolerating it very well. They are still feeding him through a small tube but hopefully they will begin to introduce nipple feeding soon. Since he is digesting the breast milk so well, they will be taking the IV out tomorrow which is wonderful news. He did have jaundice (not a surprise) but after a couple of days under the lights the jaundice has cleared up. He is about 4 pounds 3 ounces now so he has gained some of the weight he lost after birth. We have no idea how long he will be in the hospital. I know that he has to be eating well and gaining weight before they will send him home, he also has to be able to regulate his body temperature (right now he is in a incubator which keeps him nice and toasty). I imagine that he will be there for a little while but we are hoping and praying that he will come home soon. He is so beautiful and we just can't wait to get him home. Caleb hasn't gotten to meet him yet because the NICU won't let anyone under 13 in since it is RSV season. So Caleb is understandably confused. I will continue to post updates. Thank you for all the prayers, we believe in the power of prayer!

Sunday, December 28, 2008

Christmas pictures

Since I was in the hospital during Christmas we didn't get the chance to let Caleb open his presents until this morning. He was very excited when he saw the presents under the tree. The best gift he got was a portable DVD player for the car, actually the DVD player is more for Glenn and I since Caleb chats constantly in the car. We think having a DVD player for longer car trips will keep us from going crazy with all the chatter in the back seat. I also include a couple of pictures from last weekend at Granny and PawPaw's house. Caleb got to spend some time outside playing basketball and riding his tryke. He had an absolute blast that day. The last three pictures were taken at Grandpa, Gammy,and Aunt Rachel's house on Christmas day. Uncle William was there too and helped Caleb open all of his presents. Caleb spent most of Christmas day at their house since I was in the hospital. He got some great toys and had a lot of fun that day. Caleb has gotten to spend a lot of time over there lately so that Glenn and I can go to the hospital to see Benjamin. He always has a good time over there.


Saturday, December 27, 2008

Beautiful baby boy

Here are some new pics of Benjamin. These were taken today. He is off the oxygen so we were finally able to get some shots of his face without all the tubes. He is doing well, he is still being fed through a small feeding tube and they are slowly increasing the amount of breast milk they give him. He has lost some weight (which is pretty normal), he is about 4 pounds right now. He will be in the NICU for a few weeks at least, there are several milestones he has to hit before he can come home and it will take time for him to get there. I was finally released from the hospital tonight, and while it was incredibly painful to leave Benjamin it is really good to be home. I know that me being gone has been hard on Caleb (and Glenn too). Caleb needs his mommy too. I am recovering fairly well, I am getting around pretty good, although I move very slow. My mind is still reeling from all that has happened, this was truly unexpected, I'm trying to wrap my brain around the fact that I had a hysterectomy at 31 years old. Glenn and I were pretty sure that this was going to be our last baby but I kinda feel like the option has been taken from me. But I truly feel blessed to have the 2 wonderful boys that I have. I am so thankful that I was already in the hospital when things started going downhill because time was truly of the essence and the situation could have been absolutely disastrous. We praise God for the wonderful staff at the hospital who acted so quickly and did what needed to be done. We praise God that Benjamin is doing so well even at 8 weeks premature. We have so much to be thankful for. I really appreciate all the e-mails and comments we have received. I know so many of you have been praying for us. Please continue to pray that Benjamin will just blow us away and come home sooner than anyone could expect. We will continue to post pictures and updates.
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