Monday, May 29, 2006
For those who have not had the opportunity to understand why we are where we are, I will try to fill you in on the foggy details as best I can remember. Braden spent the first few days in the Special Care Nursery, as he needed extra oxygen when his respiratory dropped low coming off the C-Section drugs. He was very jittery too and having real problems trying to take his bottle, and after 3 days in Special Care they moved him to the NICU, after a swallow study determined he was aspirating while trying to eat.
The NICU was a very busy and noisy nursery, it sounded like a video arcade in there, and Braden was very jumpy reacting to all the commotion in here. Here they treated him with UV lights for jaundice, and they started doing additional testing on him. The jittery behavior they suspected was seizure activity, so they did an EEG to study his brain activity - it came back with some "noise" or abnormalities in the background... so they wanted to do an MRI, as they suspect some brain atrophy (oxygen loss & damage) to the brain. This was late on a Friday, and the test could not be completed until the following Monday. Later the same day they did and EKG to see if the jittery behavior was related to a heart matter - it came back normal. The next day they decided to perform a spinal tap on him, to see if he was fighting off any major infections - this came back within normal range a few days later. They also took some blood for more panels, and informed us we would be meeting with a genetics counselor when the results came back from the Mayo Clinic, to see if Braden may have had any disorder or disease, as they suspected he may have some sort of metabolic disorder that was causing him to have weak muscle tone. We also had several X-rays within our first few days in NICU to study his swallowing reflex and digestional tract.
After 3 days in NICU, our nurse Kim asked to get Braden moved to the ICC (Infant Critical Care) nursery that had fewer beds and less commotion, as after 3 days Braden was becoming very irritable with not much rest in the NICU. Once here, we were told that he had acid reflux disease, and they would do yet more tests and X-rays to see if this was the cause of aspiration, or if it was happening on the way down. They told us they may have to do a surgery to create an extra "sphincter" at the top of the stomach to help prevent the reflux. This was also the first time they mentioned a potential feeding tube, until he could learn to take food by mouth - as aspirations in the lungs can lead to pnuemonia. The results of the MRI came back as NORMAL, meaning some things could have fixed themselves, but he still was suspected of suffering some kind of brain damage in the last month of pregnancy, and they wanted to do a follow-up EEG to look at it again. Waiting for these results was absolute torture... being told that your child has suffered brain damage, but they don't know yet to what extent was devastating. We still won't know until he develops more along the way, but now we are in a more comfortable place about it, knowing that it probably won't be too severe since the MRI shows normal. We will continue to see a nuerologist through outpatient visits, as it is still the 'final frontier', the brain, and there are no definites here.
The second EEG showed signs of improvement over the last, so we have some hope that Braden may develop just fine, he could just be getting a slow start. A few days later we got the results back from the Mayo Clinic, that Brad & I's combination of DNA in Braden showed no signs of disorder or disease, so we should not have those kinds of issues to deal with if we have future children, but there still is always that small percentage of chance with any pregnancy that you will fit that small category. They say he could still potentially develop some kind of metabolic disorder, I guess not as critical or fatal as what they did the testing for.
So we waited for about a week once all the tests were confirmed, and the doctor team decided they would perform a bronchial scope on Braden to check out his respiratory function, they would do the nissan fundiplication of the stomach, and insert the feeding button. On the day of, they also decided to do the circumcision, since he would be on meds.
I think this should catch everyone up at least to Brad's postings. For now, we are in the "wait and see" mode with his nuerological development, the swallow reflex, and what the paralyzed vocal cord could mean temporary or permanent... and how long we will have to feed him via tube. Thanks to everyone who has sent well wishes and prayers our way... as we embark on this difficult journey as a family, we truly appreciate and are blessed by all your support.
LOVE - Kodi & Braden
Friday, May 26, 2006
He is sleeping well at night. We put him down around 8 or 8:30pm depending upon how much time either of us want to spend with him after we "plug" him in. He makes it through the night until around 4am at which point he lets us know that he either needs changed or he is ready to get up. Mom thinks that he may be developing colic. She is going to speak with his pediatrician today and try to determine that maybe some of his irritability is attributed to this or something else. If in fact it turns out that he maybe a little colicly, we will consult with our family expert Nana Wilson on how to best treat him.
This has been a very positive week for us in terms of learning to live as a family. We have read all that we could, but there is no substitute for "on the job training". We hope that everyone enjoys their holiday weekend. We continue to be amazed at what God has provided for us with Braden.
Stay in touch,
Sunday, May 21, 2006
Our first weekend at home was full of wonderful learning experiences. We have developed a schedule based around his feeding schedule. We get up in the morning at 6am when it is time to take him off the feeding pump. We take a little time in the morning to get around and then he spends a majority of the morning asleep. We eat again at 9am, then rest, then eat again at 12p and every three hours from there. At 5pm we have “Braden” time. This is when work on our exercises that were given to us by the specialist. We have tummy time on our boppy to help strengthen our neck muscles and our baby abs. He is taken to this slowly because he does not want to lay on his feeding tube button. After that we work on our swallowing muscles with the lemon swabs. These swabs work to create extra saliva to encourage him to swallow.
Tomorrow begins our week with a trip to the Pediatrician. This will be our first visit and Mom’s first trip with B by herself and driving. I am going back to work tomorrow so we have been working to learn how to do things by ourselves even though the other one is near by. Better to learn with help handy versus trying to do it and not have anyone there. I wish you all a pleasant week and we will continue to b in touch.
Thursday, May 18, 2006
Home sweet home. We have been home for little over an hour and in that time we have had one dirty diaper and had our 3pm feeding. He is resting in his room as a big boy. After 24 days of waiting and wondering he is finally home. We have a mountain of appointments to make next week with our specialist who are stilling working on our case. We are just fine with that because he is now home. We still need to be cautious about how we handle him and his feedings at home. His feedings are not that technical, but we do need to be careful on how we handle his tube and his “button” on his tummy. Last night was the first of many that we feel we will have with little or no sleep. He made sure that Mommy and Daddy knew who the boss was before we got home. We learned a lot about his pump and how to use that with him yesterday. The time flew by because so many of his nurses wanted to say good-bye before we left. It was great to know that he had made so many friends and people that we interacted with for three weeks were congratulating us as we walked down the hallway. Lastly, this will not be our final post. We still have some outpatient exercises to work on so, we will still continue to update the blog as we get updates.
Tuesday, May 16, 2006
Today was another landmark day. We made enough improvements that the Dr wanted to try him with bolus feedings. This means instead of his continuous feeds, he is back on his every few hours. He is not 100% on these because at night we go back to our pump. His first bolus feeding was at 6pm and he did not start back on the pump until 8pm. Needless to say that according to the nurse, he was definitely ready to eat at 8. We also learned that tomorrow night we have been invited to room with him in a special area. This is a good sign. They only allow parents to do this when the child is stable and ready to go home. Of course we did not give us a firm date, but this is a promising development. So tomorrow, Kodi and I will go to the hospital at 2pm and stay the rest of the day and night. The reason they are not totally sure of our release date is because we still need to get home care established along with learning how the pump works so that we can use it at night. We are not sure exactly what that entails, but we are ready for the challenge and to have Braden home. We’ll keep everyone updated. I probably won’t be able to post tomorrow night but first thing Thursday you can count on it.
Monday, May 15, 2006
Our first Mother's Day started off a little rocky. When we arrived at his bed, his feeding tube had spilled over in his bed and he was not getting any milk. We asked where his nurse was and according to one of the other nurses in the room, she was on break. Well, needless to say this put Mom and I in a dissatisfied state. Kodi had to remove herself as to not start a riot. Nana Wilson and I along with the Dr calmed him down and got him settled. He was not in any pain, he was just hungry. Kodi did manage to talk with one of our previous nurses about this and she suggested that we contact the charge Nurse. Kodi had a polite but pointed conversation about this incident. She was apologetic and reassured us that she will take care of the situation. This was apparent this morning when we arrived for our morning visit and each nurse was attentive and accommodating. Kodi made sure that they knew that we have been more then satisfied with the level of service our son has received, but we could not let what happened yesterday go unreported. I hope that all the Mothers out there had a blessed day and it was special day with Braden's mother and his Nana.
Friday, May 12, 2006
This morning Mommy & Daddy went to the hospital to visit, my first day after surgery. We were resting OK, and Mommy called throughout the night to check on my progress. Daddy went to the airport to pick up Nana Wilson, and we stopped for a short visit. The Neonatal Surgeon stopped to talk to Mommy, and shared some NEW discoveries with her. My left vocal cord is paralyzed, but they don't know if it is temporary or permanent. It shouldn't affect much of my development, but will probably give me a raspy voice as I grow up, but this is something a pediatric ENT Doc will have to watch. The Nuerologist wants to keep seeing me on an outpatient basis to watch my progress and development as I grow. The Occupational Therapist is working with Social Services to get me going in Early Steps, a program designed to help my parents and me continue to develop. My evening visit was short, as I was very irritable and jittery as post-op seems to be giving me some discomfort. My nurses and doctors are doing their best to keep me comfortable, and even re-routed traffic from the main door near my bed, to the other side to try to give me some peace & quiet rest that I need to heal and get better. I hope to have a better visit tomorrow.
Thursday, May 11, 2006
Wednesday, May 10, 2006
So, in short tomorrow will be a landmark day in our small time here on earth. Keep the prayers going, you prayer warriors out there are making an impact.
PS. I have heard some people asking around about my post yesterday with regards to Braden having suffered some pre-delivery brain damage. Let me clarify by saying that the Drs have not confirmed nor denied this of happening, but it is certainly a cause for some of our problems. This will be something that we will continue to monitor as we develop. Sorry if some you felt that I indicated that this was a confirmed diagnosis.
Tuesday, May 09, 2006
Happy two-week Birthday. Today was full of updates and consultations. We got the results from our EEG from yesterday and we have all normal variations and have improved scores from the last EEG we had a week ago, which is good. An EEG is a test done to determine brain activity. Secondly, we got the results from our genetic work that came back all normal and free of any metabolic diseases. As for the results from our swallow test this afternoon, the conclusion was that he his still aspirating after he swallows. Therefore they are going to conduct two procedures later this week. One, will be a Bronchial scope to determine what exactly is going on in his throat. This procedure entails sliding a small camera down his throat and taken a look at what is going on from the inside out. Second, we will have an operation on Thursday to implant a feeding tube into our stomach so that we can continue to work on our swallowing and still get fed. This will enable us to get him home sooner, but we will learn how to feed him through the tube. Not ideal, but we are certainly getting closer to having a full recovery. Lastly, we had a conversation with the Neurologist that basically told us that at some point in time while Braden was in the womb, that he may have sustained an injury to his brain. They could not tell us when or how severe, but that is what they have chosen to focus on now.
So, for now we will take one day at a time, and one step at a time. We will have more information to share as the week develops. Please continue to lift Braden and Kodi in your prayers.
Sunday, May 07, 2006
Today we learned that he was taken off his oxygen this morning and has been doing great. He has also begun to start using his sucking and swallowing muscles more and more, which is very encouraging. His therapist gave us some exercises to do with him to improve his ability. They scheduled him for some important follow testing Monday and Tuesday. Based on his results will determine if he should need surgery to implant a feeding tube into his stomach. They are also wanting for the results from his blood work which was sent to the Mayo Clinic to determine if he is suffering from any metabolic diseases. Brian and Jenny have been helping out greatly. Brian and I replaced several switched and outlets that were and not working properly. Jenny and Kodi have worked through several boxes and started to put things were they belong. As we get more results, I'll pass them along.
Friday, May 05, 2006
I told everyone that we would work on that family photo, well here is it with a bonus picture of Braden after his bath. Today was another good day. We got word from his Dr. that they are going to up his feedings again to 60mL and push back some procedures because of some progress we have made in the last two days. His therapist was encouraged by his sucking and swallowing reflex that she wants to repeat his swallowing test from last week. She gave us some exercises to do with him over the weekend to strengthen our oral muscles. Based on how we do next Tuesday at this test will determine many things. Also, this should be the time we get results from our blood work. Early next week will prove to be pivotal in determining our next course of action(s). Lastly, we gained a whole 2oz to 8 lbs 8oz.
Gram Betschart will be leaving tomorrow morning and Uncle Brian and Aunt Nurse Jenny will be with us for a few days starting tomorrow as well. We will continue to post updates over the weekend.
Thursday, May 04, 2006
It was not our best picture together, but we were able to take a few. He was not wanting to cooperate tonight. His tummy was upset from getting fed too quickly. Secondly, those nurses in the audience will understand, when they check his tube they blow a little air into his stomach to make sure that they are in the right spot. He did not take too kindly to that so we were not able to have bath time because he was irritable. We decided that the nurses will get the pleasure of bathing him tonight. Plus, Mommy was not up for staying late tonight. In her mind she thinks she is wonder women, but her body is not quite there yet.
We will try to work on a better family picture tomorrow.
Here is some pictures from last night and this morning. We talked with the Dr. today about his progress. They are waiting for the results from the blood work still. So, hopefully we will have information early next week. The Occupational Therapist was able to work with his sucker this morning and it is working. He is able to suck and swallow and this is very encouraging news. They will begin working with us at feeding times to improve his muscles in this area. We will go back to the hospital this evening and work on that family photo.
Wednesday, May 03, 2006
Tuesday, May 02, 2006
Later in the evening we went for bath time. This has become one of highlights from being in the NICU. The nurses allow us to bath him and spend some quality time together as a family even though we are in a very clinical setting. This has had a tremendous effect on our spirits and we enjoy every minute. After our bath, we get weighed and we gained another .4 of an ounce. Then comes the feeding. Mom usually holds him while Dad holds the syringe and pours in dinner. He tolerates it very well and is still.
Tonight was our first week birthday, so Mom and Gram Betschart brought an outfit to dress him in and he loves being wrapped up tight with his "tigger" blanket. Mom also brought him another special gift to place in his crib. A cross that his Great-Grandpa Stan made for Kodi and I a few Christmas's ago. We fixed it to the rails of his crib so that he can see it and those that interact with him see it as well. We had some more family time before we had kisses and cuddles and said our prayers.
Tomorrow will be another big day for us. The Dr.'s will meet and determine the best course of action. Most likely we will have a scope placed down our throat to see what exactly is going on down there. This is a minor procedure that he will most likely sleep through. We will then wait for those results and get some more answers.
For those of you that are reading our story for the first time, I will be doing a two part series describing everything that has happen from the beginning. Before we went to the hospital, we decided that we should keep notes on everything that happens. Little did we know that this would be so important. I have several small pages of "chicken scratch" that I need to decipher. Please be patient and look for those in the future.
Well we have definitely been through an emotional rollercoaster. We received news this afternoon from Dr. Smith, Neonatal Neurologist that Braden's MRI results were within normal parameters which tells us that he is not suffering from any serious central nervous system defect. He will share Braden's results with the lead Neurologist and feels that she will concur with his findings. They are concerned about his muscle tone for a child his age. He does have movement and feeling, but they feel that he is on the slim side for his age. They are hoping that when his blood work comes back, that it will give them some insight into his muscle tone. They are not as concerned with this as they are with his swallowing reflex. They did determine that he has Reflux disease, which is common in about 60% of new borns.
This is where we have still some more questions to answer. We met with the Neonatal Surgeon this morning that wishes to do a procedure that will look at the inside of B's throat with a tiny camera. Based on those results, it will determine if we need a tube inserted in our stomach or if there can be some procedure done to allow his wind pipe to seal properly. This problem most likely stems back to when he was in the womb. They will look to do this procedure on Thursday or Friday.
All this seems like a lot but there has been some good family time spent through all this. He has some of the best nurses working with him and us. We were able to give him his sponge bath last night. This was Mom and Dad's first bath for Braden. That experience was so great for Kodi knowing what news we could possibly get today. It helped her spirits immensely and her recovery is progressing nicely.
I would just like to say thank you to everyone that has prayed and continues to pray for our family. We are not out of the woods yet, but we are taking each step knowing that it will lead us out of there. God has been so great to us through this process and we continue to call upon him and his healing hands. We are grateful to have Braden and will treat him like the gift from God he is.
Please look back to this website for regular updates. Once I get information, I will do my best to get it updated here.
I would like to also take the opportunity to thank my Mom, Nana Wilson, for her dispatching all previous information to our family. The second person that has been a huge help though this is Gram Betschart. It helps us go through all this knowing that we have family that loves us and him so much.