The hospital

Kaleb has recently been having a lot of feeding problems. It all came to a peak last Friday night (Jan 21st). Kaleb ate a normal 4oz bottle and afterwards projectile vomited all over Dennis. Initially this was very funny because Dennis was soaked in breastmilk and I know how much that stuff grosses him out. But once Kaleb settled down we realized it wasn't funny and something could be really wrong. I had noticed during the week that Kaleb had progressively been spitting up more and more after each feeding. After he projectile vomited we decided to try to feed him formula about 30 minutes later. Again he threw it all up, this time it came out of his nose as well. Whenever Kaleb throws up and it comes out of his nose he has breathing problems for a good 30 minutes at least afterwards. As usual, he began having breathing problems and we almost called 911. Kaleb was having a very hard time catching his breath and calming down, he was screaming in pain. It was terrible. Dennis finally got him calmed down and then about an hour later I was watching him sleep and he just didn't look right. His toungue was hanging out of his mouth and it was almost a bluish color along with his lips. I quickly picked him up and he immediately vomited yellow bile all over me. We spent the entire night on google trying to figure out if we needed to go to the hospital or not. We stayed up for quite a while and decided he was better for that moment and we would call his pediatrician the next morning as soon as they opened to get him in (thank god she is open on Saturdays!). We tried to feed him small amounts during the nighttime and early morning but he spit them all back up. He had only eaten maybe an ounce in well over 12 hours. 

Once at the doctors office the next morning his pediatrician was very concerned for him and brought up the possibly of pyloric stenosis (a gradual closing in one of the tubes to his stomach) which requires surgery. Dennis and I were relieved to hear her mention this because we had read about it the night before and thought it sounded a lot like what he was going through and were hoping she was knowledgeable on that issue, which she clearly was. She told us we needed to take Kaleb to the ER so she called them for us and let them know we were on our way and to have us seen immediately. She also let us know that she did not expect Kaleb to be able to go home that night with us and that he would probably be admitted. It was really nice knowing what the options were, what testing she was wanting, and what to expect (worse case scenario)...I absolutely love our pediatrician! 

We took Kaleb to Arnold Palmer Hospital and were taken to a room within 15 minutes of getting there. Kaleb had an x-ray done, ultrasound, and urine test (they had to use a catheter to get a sample, it was so sad for me to watch them do that to him). All came back completely normal. No concerns and no pyloric stenosis. No one knows what caused Kaleb to be so sick, maybe a virus? Kaleb was able to eat a small amount of food and we were allowed to go home. 

Since being home Kaleb has projectile vomited once or twice but nothing continuously. He still spits up quite a bit after each feeding and can still only handle about 2 oz per feeding (he was previously eating 4oz at each feeding) so I'm hoping he hasn't lost any weight. We are suspecting that he has GERD (reflux) and hoping we can try prescription formulas to see what works best for him. He has been extremely colicky this week and cries for several hours a day. Sometimes he looks so uncomfortable and I have no idea what to do. Hopefully once we get these feeding issues under control some of that will go away, because I am slowly losing my mind during the hours of crying! 

Kaleb in the emergency room, poor baby! 

My bestfriend. My family. My love. My husband. My everything.

Lets be mushy today okay? Why not? I've been an emotional wreck for the past 12 hours (for no good specific reason) and I need to think about something great...my hubby. He is oh so amazing...and dreamy! ;)

He's pretty darn amazing because he...
* is a free spirit.
* is a hard worker
* kisses the kids when he leaves for work and comes home from work
* wakes up in the middle of the night even when he has to work the next day to help me if I'm worried about something Kaleb is or is not doing (i.e. breathing problems)
* helps me keep the house clean (or as clean as we can at this point)
* gorgeous (especially with a beard)
* puts up with my crazy emotions
* goes with me to every doctors appointment for our kids
* makes Nolan so happy
* makes dinner for us
* is so very patient with me, a tantrum-ing toddler, and a crying newborn (sometimes all at the same time)
* helps keep our family organized when I fall behind in that
* watches my girly shows, most I'm sure he would rather not be subjected to...and doesn't complain (most of the time)
* reassures me when I am down or frustrated with something
* loves our family and would do anything for us

I love you.

A week of a new life

Kaleb Eli Johnston
Monday, December 27th, 2010
6:22 am
9 lbs 2 oz
20.75 inches

The morning of Kaleb's birth Dennis and I left our house around 3 am and left my mom at home with Nolan. I obviously got absolutely no sleep the night before but was running on adrenaline. It was kind of nice to get to the hospital so early in the morning because no one was really there. I saw by the HUGE Christmas tree in the globe area and thoughts just raced through my mind. It was peaceful. I was taken up to pre-op and got my IV and all of the other monitors put on, I hate all of those wires! I definitely think an emergency c-section is the best way to have a c-section because when you have time everyone tells you all the scary things that could happen to you and everything seems so long and drawn out. Including the epidural, which was not bad at all with Nolan. This time around...not so lucky. I got a terrible anesthesiologist, Bernadette (I couldn't stand her name either...she was just terrible all around!) and she was training a new doctor, Constantine (he was really quiet in pre-op but was really helpful and great in the OR, before during and after the surgery). My epidural was terrible, it took forever...maybe around 45 minutes. With Nolan it only took about 10 minutes at most and was minimal pain. The lovely Bernadette put it in incorrectly and popped a blood vessel so blood got in the line and she had to try again, talk about friggin painful. I was SO mad. Not to mention she put way more tape on my back than needed which was itchy and annoying for days. My anesthesiologist from when I had Nolan was the one who took out my epidural a couple days later and we told her that we had her last year and we loved her! We told her that she helped me calm down by talking about her love for Big Brother, which I of course share. She also commented about the amount of tape on my back, seriously Bernadette! Oh and to top it off my epidural took a really long time to work, which meant I was rolled into the operating room and had my OB pinching me with big clamps...I felt all of it. I was terrified but eventually it kicked in. 

Kaleb was born at 6:22am and was crying. My OB held Kaleb over the sheet so I could see him but it was too quick. Kaleb stopped crying almost immediately after being born and I just remember repeatedly asking if he was breathing, no answer though. From reading his records he did stop breathing for a while so he needed help but then was fine on his own. His APGARS were 5 and then 7. These numbers really made everything sink in for me. I majored in Child Development...I know quite a bit about the APGARS and knew this wasn't the ideal numbers. I don't know why but I was so focused on those numbers...like they told me who my son was going to be in the future or to what extent his delays might be. Terrible but I couldn't help it. 

After surgery I went to post-op and had terrible shakes, I didn't have them with Nolan but knew they were common with an epidural. Mine were off the chart and very painful because I was shaking in my stomach too, right where I had just been opened up. I found that chewing on my hands and fingers helped calm down until anesthesia got there (not bernadette, thank GOD!) and gave me some great Demoral which really helped. Dennis left to pick my mom up and bring her to the hospital. I was told that I would be wheeled to the NICU to see Kaleb after post-op which I reminded the girls taking me to my room, they called over to NICU to make sure I could come see him and they said no because Kaleb was having a procedure done that would take an hour and I wouldn't be able to come down to see him until I could get in a wheel chair and get down there on my own. Anyone that has had a c-section knows that is no easy task, and with Nolan that took me a couple of days. I was automatically upset with the NICU, especially since I didn't know what procedure he was having...turned out to be his cardiologist work up. I did end up getting into a wheel chair that night (I was super determined) and my friend Jessica and I went to see him. His nurse was not the nicest of people, strike two for the NICU. 

I was told by the NICU that they wouldn't release Kaleb to my room until the echo results came back (with no concerns) and Dr. Pollack (our genetic pediatrician) told them he could be released from the NICU. I spoke with Dr. Pollack the next day in the hospital who said she had told the NICU he could leave the NICU and come to my room the day before and that they had already gotten the cardio results back. I was really mad. When I went to the NICU that day I confronted Kaleb's nurse who just ran off and got the neonatologist on call that day, Dr. Pera. She actually told me that I was wrong and that no one had told me that Kaleb could be released to my room after those things and then told me that they had just gotten the echo results back, when I had found out HOURS earlier from Dr. Pollack that they were already back so I confronted her on that and then she just kept saying how Kaleb is not life and death and he is basically last on her rounds and she can't call parents all of the time. I told her that she may see a lot of babies but the nurse isn't over the same amount of children and could call herself, I told her I exptected to be updated on any results and consultations that Kaleb went through so that I could come downstairs and be there. She still told me that was impossible. She was extremely rude and talked down to me...even while I was crying. It finally came to a point where I had been told all week that Kaleb would most likely go home with me on Thursday, I was so excited all day! Dr. Pera said she does her rounds on  Kaleb later in the afternoon since he was probably the healthiest baby in the NICU at that point so I called the NICU in the afternoon to ask about discharge orders. Kaleb had the same nurse all week, who was also VERY rude, and simply said that Dr. Pera already did rounds and is not going to allow Kaleb to be discharged with me and he might not even be discharged until next week. I obviously asked to speak to Dr. Pera and I was told that she had already left for the day. I was LIVID. I told the nurse that Dr. Pera should have told me that he would not be discharged and I felt that Dr. Pera did not want to deal with me again so that's why she didn't tell me. I asked why he couldn't be discharged if he was so healthy, she said because he has jaundice, which wasn't nearly as bad as Nolans. Clearly if his jaundice is the reason he is staying in the NICU then he should be under lights so I went to the NICU to make sure they were doing just that and of course, they weren't. I told Kaleb's nurse I wanted to speak to a manager, supervisor, someone. She brought me the head nurse for the day and I told her that no offense but she cannot help me other than listening. I explained to her why I was so upset this happened and she actually agreed that if Kaleb had never been admitted to the NICU he would have already been discharged because jaundice alone does not take a child to the NICU. They told me he wasn't under lights because his jaundice was not high enough to require lights for treatment...Nolan even had lights and had to be discharged home with lights. I was even more upset. I told the head nurse I wasnted to speak to someone over her and over Dr. Pera so she went and explained the situation with the director of the NICU, finally getting somewhere. The director told me she completely understood where I was coming from and the neonatologists are supposed to inform parents if their children are not being discharged that day. I was also able to tell her about all of the other snide remarks by the other nurses, like Kaleb's night nurse who told me one morning at 1am when I came to visit "not to wake him up" because she had to take a child to be scanned and Kaleb would need to eat soon. So if I woke him up she wouldn't be there to feed him. Uhm...last time I checked I am his mother and I'm clearly here and I will feed him. I don't need you to do that. If I want to pick up my baby, I'm going to. If I wake him up and he is upset, I will calm him down...that's my job as a mommy. I was so mad. The director took down names of the people I took issue with and told me she would speak to them because these things are not acceptable. She told me she would get the night doctor to re-evaluate Kaleb for discharge and see if he could reverse Dr. Pera's decision. That night I was discharged and Dennis and I went to the car seat and CPR class (all parents that have children in the NICU have to take it for their child to be released). During break we met with the night doctor who was AMAZING. He actually took time to explain everything to us about why he wanted Kaleb to stay one more night and if his levels go down he can be released in the morning. I told him that if Dr. Pera would be back in the morning that I don't think that would happen so he and the night nurse took it upon themselves to ensure Kaleb's blood testing was done before shift change so I didn't have to worry about that. I agreed for Kaleb to stay because everything was explained to me and they actually listened and agreed with what I was saying. Also, Kaleb's night nurse that night was a different lady who was AMAZING with Kaleb. She comforted him when he was getting another blood test, talked to him, cuddled with him...it was great to see that. His nurse all week had not done that at any point. Kaleb's jaundice levels came down over night and we picked him up the next afternoon. Although his nurse that day was old school and didn't want us to take any keep sake items, the technician came in and gave us his leeds (monitors that stick to his chest and wrist), blood pressure cuff, bracelet that held his oxygen monitor on, and other medical items. She was great! His nurse actually didn't even want to release Kaleb with his medication (for severe diaper rash) that was prescribed for him. She was NUTS!

It was so great to be able to take Kaleb home so quickly, most Trisomy 9 babies have serious eating problems and are in the NICU for quite a while. I was very thankful and really felt for the other parents that still had children in the NICU. During our stay at the hospital we met a couple who had a baby in the NICU since October. The day before Kaleb was discharged they scrubbed in behind us and said the baby was finally discharged. They looked so happy and we were so happy for them. 

GOODBYE WINNIE PALMER HOSPITAL NICU!!

First picture with the new addition

I couldn't stop staring at him, and counting his fingers and toes. I'm nuts!

Daddy holding Kaleb for the first time in the NICU.

Mommy holding baby for the first time, thanks to my night nurse who helped me get down to the NICU!

The view from my room...downtown Orlando

Right after my argument with Dr. Pera...I had just cried and was obviously very tired!

Mimi holding Kaleb for the first time

 My dad holding Kaleb for the first time

Not going to miss the scrub station, so long!

Kaleb ready to leave the NICU!!

First drive in the car...going home

So stinking cute!

Where has time gone?

I have been completely MIA from the computer and internet for a little over two weeks now. I've been trying to update my "delivery story" for two weeks now when I get a few minutes to myself but of course it will take more than a few minutes here and there.

Things are going well. I'm going to start updating Kaleb's doctors appointments everyday one happens, we had four the first week of his life and three this second week so I've got a lot to catch up on.

Saturday, January 1st:
Kaleb has been home for one day now, what a great way to celebrate the New Year...with a new family! Today we took Kaleb to Arnold Palmer for an updated bilirubin test to make sure his jaundice is going down instead of up. We were told that if the numbers were really bad then the hospital would call us, but if not the results would go to our pediatrician and we would get the results when their office opened back up. Good news, jaundice went down and he never needed lights (like Nolan did).

Monday, January 3rd:
Dr. Marcus, Pediatrician
Kaleb had his first well child check, Dr. Marcus wasn't in the office so we saw the other doctor in her practice. She didn't know about Kaleb prior to this visit so it was pretty short. She did confirm my concerns for regarding his head which she described as not being round and they would follow up on that. I didn't even realize it wasn't round, but instead we can feel multiple "soft spots" all over his head instead of the normal soft spot that newborns have in the front of their head.

Tuesday, January 4th:
Today we went back to Arnold Palmer again for Kaleb's follow up renal ultrasound which is a scan of his kidneys. While he was in the NICU he had one done and it showed his kidneys were slightly enlarged which needed to be followed up on. Kaleb did great through the ultrasound and the tech said we would have the results within a few days. It's been nearly ten days later now and still no results...apparently they MAIL the results to our pediatrician and she hasn't gotten them yet. Grr...

Wednesday. January 5th:
Dr. Barlow, Cardiologist
While Kaleb was in the NICU he had a complete cardio workup due to the concerns during my pregnancy for heart defects. There were some concerns from his echocardiogram while in the NICU so there is another follow up appointment. Kaleb had another echo and an EKG with the doctor and most everything was okay. Kaleb still had his PDA open (this is a valve that all babies have while in utero and it closes up within 3 days after delivery). The doctor said it is smaller than it was reported to be while he was in the NICU so he is hopefull it will close on it's own. We go back in a month and if the PDA is still open then he will need surgery soon to close it. Kaleb also has a hole in his heart which is allowing extra flow of the blood however that is not as concerning as his PDA. If the hole (PFO) is still open when he is 4 years old then he will need surgery to close it up at that time, but that is a long time from now and not something I am going to let myself worry about at this point.

Thursday, January 6th
Dr. Blumenfeld, Opthamologist
During Kaleb's stay in the NICU his development assessment showed concerns for his ability to see. Also, Kaleb's genetics pediatrician had concerns that he was missing part of his pupil. The doctor said that all of the working parts of the eye are there however he can't know for sure if the brain signals are being sent for his vision to work. He also said that he can already tell that Kaleb is near-sighted which I have no idea how he knows that, but wow. I'm not worried about the near-sightedness as long as Kaleb can see. It's really hard to go through everything we are going through, but I did not prepare myself for my child to be blind or deaf (which is another possibility as well). My heart would be broken...again.

Monday, January 10th
Dr. Marcus, pediatrician
Kaleb had another well child check but this time actually got to see Dr. Marcus. She is such a great doctor! She came in the room and had already read all of his discharge records from the NICU and had a list of all of his doctors and made sure we liked each of them or she would refer us to a new one. She was concerned about how I was doing and made sure to address that with me. Dennis voiced a concern about Kaleb favoring one side of his body (I haven't really noticed that much) and she said that she agree and believes he may have "torticollis" and if that continues and is there at the next appointment in two weeks then he will need to start some type of therapy to correct that. Basically he is only using the muscles on the left side of his body, mostly his neck muscles to do everything and his right side muscles aren't getting used.

Tuesday, January 11th
We had our SSI interview to try to get monetary help every month due to Kaleb's dissabilities. There's a big chance we won't be given the SSI because we are looked at as making "too much money". I won't continue with my thoughts on this...I'll spare you that soapbox :) They have up to 90 days to notify us whether we were accepted or not, keep your fingers crossed please!

Wednesday, January 12th
Dr. Albright, Orthopedics
While in the NICU, Kaleb had an ortho consultation. The doctor at that point said that he believes Kaleb has something called "Congenital vertical talus" which would need to be fixed by surgery and then casting. He said that the director of the program, Dr. Albright, works with these children most often so we met with him. He felt Kaleb's bones on the side of his feet and said he doesn't believe he has that condition but wanted updated x-rays. This took about 15 minutes and the results went straight to his computer in the exam room so he could show us all of Kaleb's bones in his feet. He said based on the x-rays he still doesn't think he has this talus condition and believes Kaleb won't even need surgery and may just need casting. He taught us how to do his feet exercises to help with extending his feet down so we do that at most diaper changes now. We go back in a month to get another set of x-rays to see if it is easier to see the bones to make a decision. I know he is an expert but I just don't see how only casting will fix his feet. It's not just his feet but his tibia bones that connect to his feet are also rotated in an incorrect position but I'd really love for him to not have to go through any extra surgery!

It seems like so many doctors for Kaleb only being two and a half weeks old, my goodness! We finally don't have to see any doctors next week, definitely looking forward to that. The next appointment I am really looking forward to (well not really, but ready to get some answers) is Kaleb's updated hearing test with an audiologist at the hospital. Kaleb did not pass either of his hearing tests while in the NICU. There are children who fail the hospital tests but pass the out patient tests because they are more in depth. I'm really hoping this is the case. Kaleb startles when there is a loud noise or our dog barks which is reassuring that he can at least hear some wave length of sound.

Nolan is loving having a little brother...at least I think. He tries to help by bring us his pacifiers or burp cloths but then throws them at him. He also tries to pick him up and put him in his baby seats or swing or wherever he wants him. Nolan has also regressed back to wanting to be a baby again, when he finds a bottle of formula he tries to suck on it, he sucks on Kaleb's pacifiers, and lays blankets on the floor wanting to be swaddled. I'm not able to hold Nolan until Kaleb is 4 weeks old which is absolutely killing me. It's really hard not picking up your 17 month old, especially when he recently ran into a corner at school and cut his forehead open and had to get glue stitches. I feel like a terrible mom! I'm trying so hard to make Nolan feel special and not less important than Kaleb but it's really hard to do that when I can't even pick him up. I do what I can and have already warned him to be ready for a full 24 hours of me holding him and cuddling once I can pick him up!

Kaleb facts
- he snores...loudly everytime he is sleeping (he sleeps in our room at night...its like having an old man snoring in your room but you can't make him sleep on the couch).
- he lost his belly button stump today, yuck! but diapers are so much easier now.
- he was going 4 hours in between feedings and over 5 hours at night (sleep!) but is now waking up about every 2 hours to eat...we are so tired!