Baby Jakob Quinn

What fun drama in our lives, but God is good and with many prayers from our family and friends and people we don't even know Jakob has been making a remarkable recovery.

On Wednesday April 22nd, we checked in to Ku Medical Center to have Jakob delivered via c-section. Before and during Delivery the umbilical cord was wrapped around baby Jakob's body putting stress on the body. They took him to NICU which we discovered he had Pulmonary Hypertension. At that time it was critical. There is nothing more heart wrenching then to hear that there is something wrong with one of your children and they have no answers of what the outcome may be at that time. All you have left is to pray. Because the umbilical cord was wrapped around his body and it caused stress during birth Jakob wasn't getting enough blood supply and oxygen. This could cause many of his organs to shut down..liver, lungs, kidneys, could effect the heart and brain. Immediately we asked for prayer support and what an amazing response we got. Friends from a long time ago came out of the wood work, New friends, tons of family, people from churches we didn't even know started praying for our little Jakob! It was so encouraging and uplifting!

In NICU they had Jakob on a ventilator. The first day Jakob had to use 100% of the oxygen from the ventilator and couldn't breath on his own. Day two, they moved him down to 65%. During these two days I was recovering from my c-section and could not see him which was very hard. It wasn't till Thursday evening that I finally got to get up and go see him. He was beautiful! I knew what to expect with all the tubes and tried to be strong, but it wasn't till I got back in my room that I completely lost it. He was on so many medications and tubes, but I knew that the doctors and nurses at Ku Med would doing their best. Day three, Friday, Jakob went from 55% to 65% oxygen dependent down to 34%. During this time we found out that the only organs effected were the lungs and heart. Heart very minimally and that had completely healed. God is good! And his lungs, of course, because he wasn't breathing on his own. But he was making a remarkable recovery becoming less dependent on the meds. and ventilator. We were for warned that sometimes there is a honeymoon period where everything seems to be going great and then something happens, basically letting us know that we weren't out of the woods yet. So still we continued to pray.

Day Four, Saturday, Jakob was down to 25% oxygen. The doctors and nurses were telling us that he should soon be off all meds. and the ventilator all together. Wow, so soon! Amazing! We had thought we were going to be in here for two weeks, but the progress he was making was unbelievable. Thank God! They had previously put him on a medication that basically paralyzed him so he wouldn't pull any of his tubes out. They had already started weaning him off of that med, but it was this morning that when I held his hand he squeezed my finger. What a wonderfully experience to have first thing Saturday morning! I had checked out of the hospital this day. I really hadn't thought it was that bad until I got home later that evening and was missing him tremendously! But sure enough we got up first things Sunday morning and headed to see him.

Day Five, Sunday, Jackson had decided that he wanted to visit Jakob this day. Jackson and Josey were not able to see him previously because they had to be twelve and older. Well Jackson is almost twelve and the doctor agreed to let him in since he was so close. We had for warned him that when we went in he could probably still have all his tubes in. Sure enough he did. Jackson handled it well at first but then started to get nauseous. It ended up being too much to see his little brother that day and understandably so. Brian and I decided to come back later and sure enough his tubes were out, off all his medications and we seen his eyes opened for the first time. Not only that but we got to hold him which was an unexpected surprise! Day Six, Monday, Brian worked so mom and I went up to visit Jakob. Mom hasn't seen him for a few days and was so excited to see him not hooked up to all the tubes. They were transitioning him to eating breast milk. He had not been feeding previously to this day. This was another important transitioning phase for him. To see how well his stomach reacts to food. Amazingly enough, Jakob took to his feedings well! I got to hold and feed him and it was wonderful! He chowed down on his food. I was informed by the doctor that they wanted to run a EEG on his brain and then on Wednesday do a MRI just to make sure that all is okay with his brain before they release him. I was also informed that there is a mild, moderate and severe form of what happened to Jakob and thank God Jakob's case was very very mild, but that we would need to check in with NICU for the next two years to make sure that there is no long term neurological effects. With Jakob's being on the mild end the doctor believed the likely hood of that to be non existent but we still had to take the precautions and monitor him. Let me just say how incredibly grateful I am that we did not end up on the moderate to severe end which could of easily happened. Severe would of been that he would of needed the ventilator for the rest of his life, moderate would of been life long neurological effects and more then two organs effected. AGAIN, GOD IS GOOD!!!!

Day 7, Tuesday, Brian and I were surprised to see Jakob out of his room. The oxygen tube in his nose was taken out. They had already done the EEG but hadn't received the results from that yet. We learned that Grandma and Grandpa went to visit him and got to feed him.

Brian changed his diapers while I took his temp and fed him later again. We didn't bring our camera which I wished we had cause he was so alert, eyes wide open. Just adorable. While I was holding him however, he started to twitch. We couldn't tell if this was muscle spasm or seizures. Because he was coming off his all the meds. it could very well be that his body was just trying to readjust. We pray that was the case. They were going to monitor him the rest of the night to be sure it wasn't seizures. Praying and crossing my fingers.

Day 8, Wednesday, we will be visiting him today and we'll get the results of the EEG. Find out more about the twitches and baby Jakob will be getting his MRI. Jackson also wants to try and revisit him so we will see how that goes.

LATEST UPDATE: I just called to check the time on the MRI before we came up and found out that they post poned it for a couple days. The twitching ended up being seizures so they are giving him more doses of phenobarbital. The EEG confirmed activity in the brain that he was having seizures. So please continue to pray.

Here is some information on seizures in babies. http://oce.sph.unc.edu/phnceac/babyguide/seizure.pdf

Day 8, Wednesday, after receiving all the above information we headed to the hospital. Being on phenobarbital Jakob was really tired so he wasn't able to be bottle fed but instead fed him through tubes. He also slept the entire time we were there. He had the oxygen tube back in his nose. It was a little hard to see at first, because you feel like a step back instead of forward. Once he is stabilized on phenobarbital and given the right dosage they will then schedule the MRI again. A neurologist will be coming to see him tomorrow. More than likely we will be continuing him on Phenobarbital while he is at home until he outgrows the seizures. OH fun! The seizures were a result of the lack of oxygen and blood supply to the brain.

Day 9, Thursday, Our cute little guy was still very sleepy while we were there tonight and slept the whole time, but we got to enjoy some cute little faces that he made while he slept and snuggled with him the entire time we were there. He got to have his MRI tonight. We haven't gotten the results back from that yet, but should hear about it tomorrow. They have him now on a normal maintaining dose of phenobarbital and he has not had any seizures since around midnight. He is back on the bottle and looking much better then yesterday.

After reading a couple of emails that we received about seizures and others that have gone through this it comforted us quite a bit. What a scary thing to hear at first, but Jakob is going to be fine! We'll make sure to take some more photos tomorrow!

Day 10, Friday, Jakob is doing so well. Grammy went to see him and got to hold him for the first time today. His MRI came out normal. He was having a little problem with his feedings.

OH not that he was having a problem eating..he chows, but when he was done his chest would rattle and he would cough which could be an indication that milk was getting into his lungs. Not a good thing, but feeding specialist, didn't know they had those, will be monitoring him all weekend and they may need to do a feeding test on him Monday that will track whether food is getting in his lungs or not. He didn't have this problem before he went on the anti seizure medicine so we are hoping it is just an effect of that. We will see.

Day 11 and 12, Saturday and Sunday: Jackson went up with us both days. He got to hold Jakob for the first time. Seeing him without all the tubes and as a normal, healthy baby was a much better visit then the first time. He, of course, thought his little brother was adorable.

Jakob is doing so well. His last few feeding have gone wonderfully. We are thinking he was just downing his bottle a bit too fast, but the feeding team will still evaluate him to see if he needs the further testing. All the nurses are pretty hopeful that he will be coming home within the next couple of days. Monday, a neurologist will be coming in to check on him and consult the doctor about him and he still needs his circumcision. After that he should be free to go. Yay!!!

Day 13, Monday: We finally made it up to see Jakob but it wasn't until late. Brian had a full day and didn't get home till 7:30pm. So we didn't actually get the hospital till about 8:30 at night. Waiting that long killed me. I was in tears when Brian got home and I watched the speedometer all the way there making sure he went as fast as he could possibly go. I missed him so much. I cannot wait till Jakob comes home so I can be with him all the time. At this point I am thinking it may be Wednesday. Today they did his circumcision but the neurologist still hadn't shown up. That is all we are basically waiting on.

Jakob looked so good, of course. I got there at the end of his feeding. I did forget to ask about whether the feeding team felt he needing testing. Will remember to ask that tomorrow. I swear he is the goofiest kiddo. He makes the funniest smiling faces. I wished I had taken my camera tonight, I didn't. How many photos can I take of him before he gets home anyway, his faces are just so darn cute!

Day 14, Tues: Brian and I went up earlier today and I think we made it at just the right time. It was Jakobs time to eat and a lady from the feeding team was there. So Brian fed him and she observed. She believes all is okay and informed us on what to watch out for or be concerned about. That was nice, but she didn't think he needed further testing..Yay! Still waiting on that darn neurologist. Cross our fingers he will be up there this evening and we can bring him home tomorrow!!!!

After he ate, OMG! His eyes were wide open for a very long time. That was awesome. He just looked around at everything. I got to change two poopy diapers..oh yay! His stomach is sure working, there is no question about that. While we were there he was having a hearing test. He passed. They also said before he leaves they want to do a car seat test on him to make sure all vitals stay normal for the drive home. Isn't it crazy all the precautions they take? I have no complaints. What is gonna be hard is not having the monitor hooked up to him where we can view his heart rate and so on. I hope I'm not too paranoid when he gets home.

Day 15, Wednesday: We got the okay to bring Jakob home! Yay!! By the time we got up there it was about 3:30pm. We got his prescription, they had to do a car seat test for an hour to check his vitals, got an over view of all the precautions and how to's and we were out the door by 6:30pm. On the way home I was sitting in the back with him and he started having seizures again. He would have one, then 30 sec. to a minute would go by and he would have another one. GREAT! *sigh* Once we got home and got him out of his car seat he stopped having them. We assume that it could be from the car ride home, the bumps and turns, so forth, what he wasn't use to. The doctor recommended that if he had more to call them back and let them know and if he had one more then 5 min. long we would have to bring him back in. I don't expect that I am going to be getting much sleep for the next few days and probably a tad bit anxious. When we got him home and laid him on our bed he was taking deep breaths.. I got paranoid about that. Brian informed me that he is so use to laying on firm surfaces and that our bed is probably a little to cushiony for him and that is probably why he breathing the way he is. He was fine, once we laid him in his bed.

So this is his first days home. I don't think I will be driving him around alot and we will probably be at home, hanging out for few days till we get settled in. I haven't taken any more pics yet, cause I'm suffering from lack of sleep.

Day 16 and 17, Home at Last! Well Thursday was spent trying to wake up from lack of sleep and getting adjusted. He hadn't had anymore seizures that we had noticed. His Papa got to see him for the first time and we had a couple of other visitors, our friend and husbands boss, Lindsey and my aunt Jean. Of course, his Grammy came to check on him a few times. Friday my aunt Bonnie and Grandma Barnes was over to say hi and good friend and neighbor Rachel got some snuggle time as well. However, when Rachel was holding him he had another little seizure and once she left a couple more back to back. We were told to call in to the NICU if he had more so we did. I spoke with one of the doctors there that informed me that since Ku Med only sees their neurologist once a week that we should take him to the Pediatric Er at Childrens Mercy, Especially since he had three or more in an hour.

Okay, Panic set in and off we were again to the hospital. Once again, his car ride wasn't pleasant at all. He had several seizures in a row while we were driving as was the case on the way home from discharged. Once we got checked in at the ER we literally waited for four long hours before we seen anyone. They took a Phenobarbital blood level check and it came back therapeutic, which basically says it's where it should be. We never actually spoke with a neurologist once again, but were told that we are to call Childrens Mercy on Monday and set up Jakobs next apt. to have another EEG ran on him. We will start going to Childrens now instead of Ku, because they have more Neurologist on staff and on hand to handle his situations. They were going to prescribe another anti-epileptic med which was suppository that would of been taken when he had several seizures in a row, but later opted not to because it could cause problems breathing and because of his age, so we have what we started with when we went in there. Really leaving not having any more answers then what we started with. We got home at 3:30am in the morning. What a way to spend a beautiful Friday evening. Again, several seizures in a row on the drive home.

Well, We will get a call in on Monday for his follow up apt. Again, we won't be driving him anywhere since the car ride obviously triggers more seizures and there is nothing more we can do about it right now and we will continue to monitor his seizure activity at home.