Friday, May 30, 2008
Thursday, May 29, 2008
Around 5:30 Dr. Minderman came in. Dr. Minderman(Dave) is one of the neonatologists and just happens to also be married to my cousin. So he's family. They've been on vacation and just got back today. I figured he was stopping in to say hi. But he sat down and began to tell us the results of our EEG. It showed that he was having abnormal brain activity, most likely seizures. I felt as if the floor had just dropped out from underneath me. Seizures, what does that mean for him. I couldn't even think straight. Dave was so good with us and I felt so bad for him. We had talked early on that he wouldn't get to involved with Matthew and let his partners take care of him unless he happened to be on call. Now I see why. How hard is that to have to give news like that to family.
So last night they started him on phenobarbital; a medicine to help with this "abnormal brain activity." I called Steve and he came from Lincoln right away. That made it a lot easier to have him here. He immediately took me out of the NICU and we went and got something to eat. We were able to sit and talk and visit. Steve also has a great sense of humor. He had me laughing by the end of the evening. Exactly what I needed; especially since I tend to be a very serious person. Now don't get me wrong, he is equally as worried as I am, but he balances me out so well. I guess God knew what he was doing when he put us together.
We also decided it was best for my emotional health to stay at the Rainbow house and get some much needed sleep.
Fast forward to this morning. I feel so much better. The neurologist came and visited with us, reassured us and gave us more information. She isn't so sure these jerking movements are "seizures", but does know that he is having abnormal brain activity even when he isn't having these jerking movement. The medicine should help this and we'll follow up with our pediatrician as he'll have to have levels checked frequently. We'll also follow up with the neurologist in 3 months to see what she thinks. The neonatologist thinks that this won't delay our dismissal more than a couple of days, but I'm not going to even think about it until they put him in his car seat and tell us we can go home. I got my hopes dashed and I don't want to have that happen again.
Of some note: you may wonder about his results of the VCUG from yesterday. It does show his kidneys have some reflux but it's not too bad. He'll need to be on a low dose of antibiotic for 1 year and we'll recheck his kidneys after 1 year. The kidney doctor says he has a "greater than 50 % chance of out growing it" by the time he's 8 years old. With everything else that happened yesterday, I'm not even mildly concerned.
Now one final thing. I think I could've handled this much better had I had even some quality sleep; but I was a wreck!! I've decided to give myself permission to go to the Rainbow house each night and let the nurses bottle him while I'm gone. I'm not going to try and kill myself over feeding him and then not be able to cope if another bad piece of news comes my way. And let me tell you, just when it seems that they can't find anything more, they do-so I'm not even banking on this being the last time we jump on the roller coaster.
Wednesday, May 28, 2008
My brother Curtis with Megan and Mason over the weekend
Big brother Micah holding Matthew for the first time on sunday
We're finally tube free on Tuesday!!
We're very ready to come home!!! Update more soon
Tuesday, May 27, 2008
- Genetics councelor came today to get a family history on Steve and I
- Matthew had his CT scan done
- Dr Siedel (neonatologist) rouned, nothing new except they are letting me just breastfeed him and if he doesn't feed for 5 hours, then visit with nurse practitioner about how much to feed in his NG
- Orthopedic doctor rounded; stated that he isn't worried about any of the skeletal abnormalities, and that we shouldn't be either. Told us what a special baby we have!
- Dr Puccioni (he put Matthew's shunt in) came through and said CT scan looks good. The neonatologist had origially said that he was worried about a spot in his brain that looked like it wasn't developed, but Dr. Puccioni said that this wasn't even an important structure for kids who have hydrocephalus, that "it's not even needed". He said "nothing to worry about".
- I accidently pulled Matthew's NG tube (the tube in his nose) out today when I picked him up. At this point we're going to leave it out as we haven't had to use it since 4 am. We're officially tube free!
Tomorrow he'll have his VCUG; which was previously mentioned in the last post. We'll continue to work on feeding and hope they'll let us go soon! I have some pictures to post, but Matthew thinks he needs to eat now, so I'll try and get them on the blog tomorrow.
Monday, May 26, 2008
The kids were able to see Matthew for a little bit and then Steve took them over to the Rainbow house to play on the playground and then he took them out-to-eat for lunch. That freed mom and I up to visit and for mom to get some snuggle time in with Matthew before she left. Dr Siedl (the neonatologist) was in and visited with us about what he thought the next week would hold. He scheduled a CAT scan for tomorrow (I can't remember the significance, but know that Dr Puccioni-the doctor who placed his shunt-wanted this test done) and then he also scheduled a test on Wednesday that the urologist wanted. This test is called a VCUG (for those who want to know what that stands for- its voiding cystourethrogram). This test will show if he has any problems with "reflux" in his kidneys. Since his kidneys are fused and both on one side, they want to make sure that they are both working properly. Both these tests will not take very long and the worst part of the VCUG is that they will temporarily place a catheter in him while they do the test.
Next Dr. Siedl talked about his feedings. At that point, he was only breastfeeding for 3-5 minutes typically. That isn't enough to get the nutrition he needs, so that is why he was also getting feedings in the NG tube. He said we would be patient and try to get him to eat more, but if we were unable to after another week, we had a couple options. He could send him home with the tube in his nose, but there were some risks to that. Or, we could put in what is called a G-tube. This is a tube that is placed straight into the belly by and incision and then he would get his feeding through that. Now, I don't want to have a G tube unless absolutely necessary!!!!! It's another surgical procedure AND another thing to take care of. I visited with the nurse practitioner and she changed his tube feeding schedule to every 4 hours instead of every 3 hours to give him a chance to get hungry. She still wanted him to get the same amount of milk in 24 hours so she upped the amount he got per feeding.
THEN Matthew and I had a talk. I told him he heard what the doctor said and that it wouldn't be very fun to have a G-tube, so we needed to work on this eating business. Well at 1:30, he woke up right before daddy was going to leave and acted hungry. So I tried to breastfeed him. He ate for a couple minutes and then went to sleep. I told him that that wouldn't cut it. I woke him up again and tried again. This time he stayed on for 13 minutes, yeah!!!! I even made the nurse come in and see. He fell asleep till 4pm and woke up hungry. This time he nursed 14 minutes! Yeah Matthew! The nurses consider a "full feeding" when they breastfeed at least 10 minutes, so he had gotten 2 full feedings! It was time for his tube feeding, so I asked the nurse if we still had to give him his tube feeding since he had just eaten so well. She didn't know, so she called the nurse practitioner and she said that as long as he feeds for at least 10 minutes, he doesn't need his tube feedings. Yeah again!!! At 7 pm he woke up and ate very heartily for 15 minutes, so I do believe we're making some good strides! Now, he just has to keep this up for a couple of days and we can GO HOME!!! I'm not holding my breath though yet, as we've just begun; but this is wonderful progress!
Sunday, May 25, 2008
Yesterday, I was also dismissed from the hospital. Steve and I will be staying at the Rainbow house, which is a wonderful place for out-of-town families to stay when their children are hospitalized. We went and checked in and then had supper there. All of us then went back to the hospital to see Matthew again. My mom noticed that the thumb on the hand his IV is in was very swollen. We had the nurses look at it, but no one could decide if the IV was actually blown or if he had worked on the tape so much that it was making his thumb swollen. They made the decision to restart his IV. More pokes, yuck! So after they had tried numberous times, they weren't able to get another one in. The nurse practitioner even tried in his head. So they called the neonatologist and he said he would come in and see what he could do. He came in later and said that since he was tolerating his feeds so well from his NG tube that he could leave his IV out, and that they would just continue to bump up his feedings in his NG. Halleluia!! Steve and I were both sick of that IV! We were both so happy!
We both left around midnight for the Rainbow house. We had to stop on the way at Walgreens and pick up my pain medication.
I woke up around 5am pretty uncomfortable. I hadn't slept flat since I'd had the c-section; my bed was always just reclined. So I had Steve just bring me up to the hospital and he went back to bed. I was able to sleep so much better in the recliner at his bedside.
Matthew woke up around 7:45 to eat. He breastfed about 5-10 minutes which was good for him. Then the nurse hooked up his NG tube feeding and while we did that he woke up for about 15 minutes and looked around. He has NEVER done that either! He was so alert. His nurse even said he was a different baby today. I think it's because he doesn't have his IV feedings anymore. So we have made great steps this weekend! We 're hoping this only leads to getting home soon!! We're ready!
Here's some cute pics
Eyes wide open this morning while he was getting his feeding. Isn't he sweet?
Friday, May 23, 2008
Steve and I went to see Matthew this morning and they were just changing nurses over. His new nurse, Brandie, took one look at his IV and said it needed to be replaced because it had blown. Poor little buddy! But she got it in one stick and it looks much better than the previous one he had. The neonatologist ordered a eye exam and the doctor came up to do that around 8am. We went back to our room and ordered breakfast. I was so exhausted, (i think I only got 4 hours of sleep) that I fell back asleep while Steve went and snuggled Matthew in the NICU. You would think we were first time parents as much as we go hold him! We just can't get enough! I woke up around 10 and we spent till noon snuggling with him. He had to go to his MRI then. The nurse gave him some medication to sedate him and he was off to have the MRI and then his xrays done.
They called us around 2pm to tell us he was back to his room. When we got back he was hopping mad!!! I had never seen him move so much. The nurse said that the medicine to sedate him didn't really sedate him much. I took him in my arms and he started rooting around. I was SO excited. He hasn't done that EVER!! Well, I tried to get him to eat, but that just made him even madder! He did suck on my finger for awhile; which is progress and then promptly fell asleep! Lactation also came to see us and gave me some helpfull hints for the weekend as we'll have no lactation help this weekend.
Social work also visited us and they will set up our therapy services in Lincoln once we go home. The patient care coordinator also visited with us and is starting to get things set up for us as far as follow up appointments go.
We're just waiting on Matthew to make up his mind and eat. That is all that is keeping us from going home. All his big tests are done. We're so thankful. Feeding wise, they may put a tube in that goes in his nose and down into his stomach so we can give him some of the milk I've been pumping, until he makes up his mind to eat. That will also help us by getting his IV out; because right now, all his nutrition comes from his IV.
We're just getting ready to eat supper and then go spend the evening with our little man. They will discharge me from the hospital tomorrow and then we will go over to the Rainbow house. This is a place we can stay that is close to the hospital, and not have to drive to and from Lincoln everyday. I will still probably spend most of my day at the hospital, but this will give me a place to lay my head.
Thank you to everyone who is praying for our family. Please know that each one of you is special to us! We are so thankful to have all the wonderful support from our family and friends. We couldn't do it without you!!!
Thursday, May 22, 2008
Today has already been very busy. First though, I'll recap yesterday. He had his shunt surgery and Dr. Puccoini said it went well. He came back and was very, very tired. We spent sometime with him yesterday, and my mom and Megan and Mason were able to come see him. My mom was able to hold him and so did Megan. He was pretty wiped from the surgery. We went to my room for the night around 10 pm and other than pumping every 3 hours; got a good nights sleep (for a hospital).
This morning, we were up around 7 am to get ready to see him. Dr. Bonebrake and the OB resident, Dr. Grossenburg came through along with another resident. The nurse came through and did her morning assessment; and we were off to see Matthew. I was pretty sore this morning, but have been feeling better each day.
We got to Matthew's room around 8:30 am. The neonatalogist had ordered an echocardiogram (they heard a slight murmur) and the tech was there to do that. As soon as she was finished, lab was there to draw some more blood. His poor little heel looks like a pin cushion :( As soon as she was finished, ultrasound was back to do an abdominal ultrasound. They also had a new machine and wanted to test the "new functions" out on Matthew. So it took EXTRA long to do his ultrasound.
Let me back up and tell you why they are doing all these tests. The neonatologist has consulted with a geneticist to look at Matthew. The geneticist ordered this abdominal ultrasound. The neonatologist told us this morning that in addition to having a heart murmur, he also has two vertebrae that are "butterflied" Basically the vertebrae should be a rectangular shape, but 2 of his are shaped more like a butterfly. No concerns for now, but it'll need to be followed by a orthopedic doctor as there is a chance he could have some some scoliosis. Also some of his blood work that looks at his thyroid was slightly off, so they had to draw more :(
Then this afternoon, the results of the abdominal ultrasound showed that he has some abnormality to his kidneys. He for sure has one kidney and thinks that maybe the other kidney is fused to it. This is very perplexing to us, as I've had a gazillion ultrasounds and every one showed that he had two kidneys. We're hoping that maybe this ultrasound is wrong; but regardless, they will be getting a kidney doctor also involved. The neonatologist also wants to do a MRI tomorrow to look at some different areas of his brain to see if /what damage has occured. He is also having an eye doctor come check his eyes to see if his optic nerve has any damage. Both Steve and I are very frustrated today. We just want them to quit looking for things wrong with our precious baby boy. To us, he is perfect; hydrocephalus or not. If he's blind; so be it. If he has scoliosis, we'll deal with it. We just feel like every test they do, they find something more. If it's a genetic abnormality, so be it; it won't change the way we love our baby. In a way, we understand the Dr.'s point that if we can collect all this while he's here, we can save ourselves a lot of appointments down the road, but it doesn't make it any less frustrating.
We did get some good news today; his echo (heart ultrasound) is normal and we get to try to start feeding him today. He, on the other hand, is not one bit interested yet. He is still very groggy. so we'll see how today goes; if he doesn't take to it, they'll place an NG tube (a tube that goes in his nose and down to his tummy)tomorrow and start giving him some of the milk I've been pumping to him, so we can discontinue his IV. We'll continue to keep trying to feed him orally, but the tube will supplement what he doesn't get. Steve and I are both ready for his IV to be gone. We're always worried about pulling on it.
He'll also have the MRI tomorrow, so they won't feed him for a while before that; because he will need to be sedated for the procedure.
Well, I'm exhausted. I don't know if I'll update anymore today, but will try to tomorrow.
I'll leave you with a couple of pics of our darling!
Megan gets to hold Matthew
Mommy and Matthew enjoying so "skin-to-skin" snuggle time
Daddy and Matthew
Wednesday, May 21, 2008
Matthew Owen Soldatke was born on May 20th at 12:42 p.m So sorry I didn't get anything uploaded on the internet yesterday. It was a busy day and I was not feeling the best. But he is worth every bit of it! He is SOOO cute. I am in love!! He is having his shunt surgery as we speak. He seemed a little uncomfortable and I think he probably has a headache. I'm extremely tired, so I'm just going to post his stats and pics and I'll type more later.
Matthew Owen Soldatke
21 1/2 inches long
head circumference: 40 cm
dark hair, extra cute!!!
Steve and I, right before surgery. I'm nervous, can you tell?
I'm exhausted here and can hardly keep my eyes open!
Friday, May 16, 2008
Thursday, May 15, 2008
Mostly, I think reality will have to set in. That's scary. I've never had surgery; and as much as I talk my patients through it day after day, it's not me laying on that bed. In some ways, knowing too much is a bad thing. Also, I'm a bit what you'd call "granola". I normally see a midwife with my pregnancies, I don't use alot of medications, my babies are put on my stomach after they're born, and they room-in and breastfeed. I like things natural. I don't like them leaving my room without me. So having a baby in the NICU will be a huge change for me. He'll have tubes and wires and won't breastfeed right away. I don't know when I'll get to hold him, or when his siblings will hold him. I know it's necessary, but it doesn't make it easier. It's all starting to sink in.
And to top it off, I"m still on "modified" bed rest. So it gives me lots of time to think about all this! I'm calling it bed-rest psychosis. I'm driving myself crazy. Literally! I think I've diagnosed myself with every problem that I could possibly have, and then, a moment of sanity comes about. And I can so-call "call my myself down off the ledge." I told you knowing too much can get ya into trouble!!
Well on a final note; I saw Dr. Bonebrake today for the last time before my surgery. He says baby looks good, he did an ultrasound and his head has stabilized in the 40cm range and ventricles remain around 33mm. The amniotic fluid was even a little decreased, in the "high 20's". His movement has slowed a little and has caused me a bit of concern (imagine that). Dr Kenny had monitored me last week on the fetal monitor and Dr. Bonebrake did the same today. He says it looked "all-right"; but not spectacular. He wants me to keep in close check with his movements till surgery; and if there are any changes to go to the hospital to be put on the monitor. He is more active at night, but he has definitely slowed down.
I don't know that I'll have anything blog-worthy until he's here on Tuesday, but I'm definitely going to try very hard to get his pictures on the blog by Tuesday evening or Wednesday morning, depending on how I'm feeling. My surgery is scheduled for noon on Tuesday, so prayers are definitely appreciated!
Friday, May 9, 2008
Thursday, May 8, 2008
Kristen who I have met through a very cool connection of mothers with children who have hydrocephalus, tagged me. Anyone who needs a little inspiration needs to read her blog! She is an amazing person. If I can be half the mother she is, I will consider myself blessed!
- What I was doing 10 years ago:
- In nursing school and just coming home from the hospital after having our 1st child, Micah, who was born May 5. Enjoying my summer off of school and my brand new baby. We also were preparing to move into my grandparents old farm house to be close to my parents.
- 5 things on my list of things to do today (lets go tomorrow, it's already supper)
- Finish our last week of school (I homeschool our children-tomorrow's our last day)
- I've been approved to be "up and around" for up to 4 hours a day; so maybe sweep my wood floors and scrub the main bathroom.
- Make calls to coworkers and try to finish covering my hours at work- only 16 hours left to cover.
- Put my feet up and sit around (boring; and I hate it!!)
- Get my cell phone fixed and a battery for my laptop(on ebay, of course)
- Things I would do if I were a billionaire:
- Pay off our remaining debt
- Build a bigger house; nothing extravegant, just bigger than our "cozy" little home.
- Get my husband started on his own business.
- Give to our church
- Give to my parents whatever they wanted, and help my brothers with whatever they wanted
- Put away for my kids college education
- Buy the new minivan that has a table and the 180 degree turn seats!
- Take my family on a great vacation
- Pay off my brothers college debt
- Three of my bad habits
- I have a temper :(
- I am too serious
- I spend too much time on the computer
- 5 places I have lived
- My parents home/farm that I grew up on: Parker, SD
- In our first very small apartment in a very small town of Monroe, SD- right after we got married
- 1 apartment in Sioux Falls SD for 1 year and then rented my grandparents old house back in Parker, sd for 1 year
- Hickman, Ne- Our first real house
- Lincoln, Ne- our current residence
- Five jobs I've had
- My parents farm till I was 15
- Hilltop Nursing Home as a CNA
- My current position as a Labor and Delivery RN at St. Elizabeth Hospital in Lincoln- 9 years and counting
- 5 people I want to know more about: that means you've been tagged
- My sister-in-law Kim
- Her mother Connie
- All my other blogger friends that I know of have been already tagged! Anyone else want to do it, that I don't know you have a blog? Go ahead and let me know you're out there!!
Tuesday, May 6, 2008
Our family tradition is to go to the restuarant of the birthday person's choice; the kids almost always choose Applebee's. We went out for supper and had a great Dairy Queen cake for dessert when we got home. (i figured eating out is kinda close to bedrest, right??? Shh...don't tell anyone!)
Enjoying his dessert at Applebees
Getting ready to sing happy birthday and eat some cake!!
May 5th: just born! Don't we look young!!
4 months old! Enjoying a warm summer day outside
1 Year Old!
More pic's to come as I dig them out of the closet!
Saturday, May 3, 2008
Friday, May 2, 2008
Baby looked good on the ultrasound. His ventricles only grew 1 or 2 mm and his head circumference is 40 cm's which is a cm or 2 of growth; so no rapid jumps, which is good. He's our little trooper, that's for sure! He moves a ton, too! I guess he's still got the room since my fluid level is now 37! (normal is 9-16). All my patients keep asking me, when are you going to have that baby! I must look full term! :)
He's still breech, so the plan is to still do a c-section on the 20th, unless my blood pressure doesn't behave. I haven't gotten any 4-d pictures in a while, but if I have another ultrasound, I'm going to ask so I can see him one more time!! I'll try and update tomorrow to let you know if we get to go home or not. We're hoping so!!!