BPD Clinic

Well we just got back from out Dr.s apt at Vandy and not alot of changes but we are def in the right direction. Dr. Austin said his lungs sound awesome and no noises that shouldn't be there and that he is passing good breathe sounds. While we were there, they let him have a room air trial so that they could see how well he holds his sats up. Well of course Landon showed off and stayed at 100 the whole time. You would think that would be conviencing enough to say that Landon is good to come off of it, but they they had to throw something new in as to why he doesnt. Which by what I gathered today he had this PDA and hypertension in his heart when we were in Vandy last but it was all new news to me today. Needless to say that didnt set well with me. So for the time being Landon is allowed to go during the day without his O2 but will still need it at night and on March 6th we will be going back to Vandy to meet with the lung dr.s again and at this time they will also be doing a Echo of his heart to see if the PDA and hypertension is still there. Dr. Austin did say that if the Echo showed PDA then we would have to then talk about what needed to be done from there. He mentioned that it didnt mean surgery but that it would be a possibility. So now we are enjoying our free time during the day and will continue to listen to that soothing sound of the oxygen concentrator at night. We also were up 10oz today so that now makes up 13lbs 14oz! Landon is becoming a chunker and I love it!

Princess Payton

Just talked with Nikki Payton's mom and Payton has been on the nasal cannula for around 4hours now and is doing great. She said that if she continues to do good they will let her try a bottle soon. I cannot even begin to tell you how big this is for Nikki, Payton and her family. They have been through so much with Payton and have had so many doctors telling them there was nothing else that could be done. But with lots or prayers Payton is sailing right out the door to go home. Keep praying for Payton and her family because there are still many obstacles they will need to overcome before they get to go home.

Dr.s Apt

So Landon had a check-up today with his pediatrician and he is very impressed with how he is doing. Landon weighed 13lbs 4oz and was 25in long today. Dr. Clifford did change us back to 22 cal since we had gained almost 3lbs in 23days. He said he was gaining too much too quick. So that's a plus we wont be going through so much formula now. Next week we have appointments with the lung doctor and we are hoping they decide that Landon is doing well enough to come off the oxygen.

We also heard from Nikki Payton's mom and she is still on CPAP and if she continues to do well, then they are going to try to put her to nasal canula tomorrow or Sunday. Praise God for that news!

These are the times I hate being ALONE

Well we received a call this evening informing us that my mother had been called to the Nursing Home and that my Grandfather wanted to see all of his daughters right away. I'm sure it might be premature to say this but my grandfathers health has taken a dramatic decline over the last few weeks and my grandfather has shown that he really is just ready to give up and he is tired. I watched him go down hill since MawMaw died and I guess i feel like once he passes away then thats the last thing that keeps me close to her. I mean she will never be forgotten but with both of them gone means that my two favorite people are gone forever. On a better note, Baby Payton has been on CPAP since around 11am this morning! So far she is doing well and I want to thank everyone for there prayers! Payton is strong and is proving that to us daily.

Been Awhile

So its been a few days since I've last updated. There really isnt much to update for right now. Jonathan is on the road and will probably be home within a week or so. Most nights its ok, but some nights I get pretty freaked out at night. Landon is still doing good off his oxygen but we talked to the Lung Doctor today and they want us to put it back on him till they can see and re-evaulate him. That is fine and all and I don't want Landon to take any steps backward but I know he is doing so well without it and its just frustrating because I just don't want the doctors thinking his sicker than he really is. They always seem to make things worse than they really are and im just afraid they will think that he isn't doing as well as good as he really is. I know Landon more than anyone else and know when it he requiring more assistance. He is still hooked up the monitor so that he doesnt get into a situation that could get worse. Oh well I guess I will just do as the Doctors say since they are the ones with the degree and we will see them next Friday. Hopefully they will see just how strong my little guy is and will send us home free and clear of O2.

The results are in......

Well Landon did a whole lot better than his stinking mother last night. He slept from about 8:45pm to around 2am and that's when he woke up ready for a bottle. He went right back to sleep after his bottle and more than likely would have stayed in there the rest of the night but.......You see Landon's bedroom door does not latch and you can just easily push it open.(Don't ask me why we are trying to get in touch with Landlady to fix) Well We have just recently inherited my grandfathers cat who also thinks that Landon's crib is also his bed. We have tried everything to keep his door closed to placing his oxygen in front of the door to placing something behind it to keep it closed. All those are fine ideas, but freaked me out knowing that if something were to happen and i needed to get there right away I would have to move all this stuff instead of just opening the door and going in. And then there's the cat. I'm afraid if I find him in the bed with Landon that he may go flying out the door and this cat would never survive outside. So it looks like until we can get the door to Landon's room fixed he will remain with me in our bedroom. Oh im such a wussy momma!

Nervous Momma

So tonight we are going to try and let Landon sleep in his crib for the first time. This has struck up so many emotions. I'm so stinking nervous about this. He is still hooked up to the monitors and he will sleep with his oxygen on but he will still be all the way across the house and won't be within arms reach. I'm also kinda expecting failure with this because we have already put him town asleep and he already back up. Well I will blog more about the outcome tomorrow.

Improvements

So I woke up this morning to Landon having is O2 down under his chin. During that moment I kinda panic thinking OH NO did I not hear him go off and check the monitor. Its reading 100% and everything looks to be working so I take a sigh of relief. I had to take the dots that hold the oxygen tubing off his face yesterday due to him developing large red whelps where the dots were. After this time time I had tried to tighten the tubing enough to keep it on his face but apparently I didn't do a good enough job. Well im still not able to put the dots back onto his face since the whelps are still there and since he seem to be doing so well without the oxygen, it is still off and we have had no problems at all today. It is so good to see his face again and not have anything taking up any of that cuteness. I do believe that we are on the right path to come completely off the O2. WAHOO!!!!!! On another note, since they have increased Landon's calorie intake to 28 cal per oz I have been noticeing rolls! Yep thats right, Landon's got rolls now! He has really become alittle chunker. Im real anxious to see how much he weighs the next time we go to the doctor. Well over the next few weeks we are bombarded with doctors apts right after left so im not looking forward to getting Landon out so much but hopefully we will have good results and won't need to go so often after that.

Reflections of 2008

So yeah I'm alittle late on this considering 2009 has already been in swing for a few weeks now but I sat in bed last night thinking about everything that had happened during 2008 and how I hope 2009 is much better for our family. 2008 started out like any other year did. Jonathan and I went to the annual New Years Eve Party at a good friend of ours house but unfortunately this year I only got to stay till 12 because I had to be at work at 7am the next morning. A few days later on the 4th came my 23rd birthday and we spent it here in Pulaski with my family. The next day when we had just went to bed, we received a phone call from Jonathan's parents informing us that Tammy our really close friend had just passed away so we quickly rush to get our things together and make the trip to Manchester. That trip to this day is still a blur to me. Over the next few days we are at the funeral home with family for this difficult time. The rest of January is spent trying to take in the fact that Tammy is really gone. February starts out good, Jonathan receives his settlement from his wreck and we are able to pay some much needed bills. We also decide that we are going to move back to Pulaski and start looking for a place to call home. We move February 15th and after a long long night we get a call in the am that Laura is at the hospital with what they think might be HELLP again. So here we go again! Laura is then transferred to Centennial for the remainder of the pregnancy(which we aren't sure how long that will be) and I become the official surrogate mother for Tatum. Laura is stable this time and the HELLP is not as severe as it was in 2005 with Tatum. She delivers a beautiful little boy on February 23rd at 3:32pm. Joel David weighed 1lbs 12oz. Fast forward to Feb 26th, Jonathan and I go to Nashville Fertility to start the process of InvitroFertilization and while there we found out that we are pregnant and will be having a family of our own soon. The excited is overwhelming for the fears of Laura's history haunt me. Pregnancy is going smooth except for my worrisome self. We found out we are having a boy and decide that his name will be Landon Bryce. Everything is going smoothly up to my 25wk apt and this is when my world crashes around me. I am starting to dilate and sent straight to the hospital to be monitored and giving steroids to help with Landon's lung development. After two days of hospitalization I am sent home on strict bedrest. After two weeks of bed rest and another 2day stay in the hospital my water breaks and we know that Landons coming whether we like it or not. Thankfully they are able to hold me off for about a week before have to start me on pitocin and on August 8th, 2008 Landon Bryce Huls entered the world at 12:10am weighing in at 3lbs 0.6oz and was 16in long. After a 8 week smooth sailing stay in the NICU we bring Landon home at 5lbs 14oz. Everything is going well for about a month and then Landon develops this cough. Being a preemie mom you worry about everything. Because what could be normal for us could be deadly to them. We take him to Hillside, they send us home. He is still no better than Saturday and so we take him back. His O2 is in the high 70's low 80's and they proceed to life-flight him to Vandy where we are diagnosed with double pneumonia and stay about a week and come home. Everything seems to be going well till I notice that these coughing spells are getting much worse and he seems to quit breathing when having them. I call my sister who is working and inform her that I am bringing Landon in and that something is just not right. I get there and she then see what I mean and rushes him back to the doctor. They really dont even do anything for us there, but call an ambulance. We are on our way back to Vandy! We get to Vandy, Laura is with me the whole time and they inform us they are going to do a pertussis test because it seems that he may have this. What? Are you kidding me? While still down in the ER Landon decides to have one of his coughing spells only this time it is much worse, they proceed to jerk him from my arms and throw him in the bed. Thankfully not other interventions had to be made at that time because he came out of it, but this would be the start of horrible things to come. We stay on the regular hospital floor for about 24hrs before they decide that Landon needs to be someone where he can be monitored more closely and they were changing him from just regular O2 to a nasal cp. They did inform me that if he continued to have this spells that they would have to intubate. I knew that this would happen because Landon was wearing himself out and getting weaker and weaker with each spell. After about 12hour on CP they are then forced to intubate and my little Landon is now on a vent. The next few days are a blur to me, because Landon was just getting worse and worse and every Dr who talked with us had that look of fear in their eyes. No mother ever wants to see that look. After a two week stay on the vent, they feel Landon can come off and they move him back to nasal canula. This last for about 12hours and then he is moved back to nasal CP and we are told they may have to intubate again. AHHHH! Thankfully they are very aggressive with treatment over the next few days and are able to get that right lung back up and we go back to nasal cannula. We are then moved out of the PICU and onto the floor. We are then referred to the Pulmonology Group and have test run to determine why Landons lung doesn't want to stay up. They come to the conclusion that Landon has Trachamalcia(Floppy Airways) and that he will grow out of this. They did inform us at this time that if Landon continues to require hospitalization and ends up in the PICU then we may consider placing a trach. A mothers nightmare. We are released the next day Dec 17th. Landon went home on oxygen and butt load of medicines but He came home. We got to spend out first Christmas at Home and couldn't have been happier. We did nothing for New Years and were asleep pretty much as soon as the ball dropped. Although 2008 brought our family so many trials and test of strength I can't help but be blessed that I have the family I have.

Lonely oh so Lonely!

Well Jonathan has only been gone less than 24hours and I miss him more than any other time he has been out on the road. I'm not sure why this is different than any other time with him being gone but it is. With this company comes changes. He is no longer able to say when he goes home and how long he is going to stay. With his other company he was able to say when and how long he would be home and now it looks to be close to a month before he comes home. I'm not particularly worried about me during this time because I know we will be able to just pick up right where we left off, im more worried about Landon and Jonathan's relationship. Landon is getting older and starting to recognize familiar faces. Now this company does have so many more incentives than the other company Jonathan was working for. With the other company taxes were not taken out he had to pay for his own fuel and the people he encountered along the way were some of the rudest people. With this company comes more pay, fuel is paid for and the biggest one of all FAMILY INSURANCE! As many of you know our lives have been anything but normal the last few years and we are hoping that with Jonathan's new job things start getting back to normal. On another note, I went to the Doctor for my yearly check-up. While there I discussed with my doctor about getting my tubes tied. I don't even think he thought about. He told me that he really preferred not to and he gave me information about another procedure that last for 5years and if after that time we still wanted to go that route he would. So within the next few weeks I will be going in to have that done. Growing up, I wanted to be that one who pop kid after kid out but now after everything it took to have Landon and everything Landon has been through I am just blessed to have the great child I have. Well enough ramblings. It's time to get Landon ready for bed, and then its my turn!

Irritated so to say

I'm not usually one to say something when a person makes me mad, but today must be one of those days. And I hope that I don't step on anyones toes when saying this. It has recently come to my attention that some are thinking that I don't allow Jonathan to take care of Landon and that I do the majority of the work around the house. This however is completely untrue. Jonathan tries his best to allow me time to myself and even let me sleep in the mornings, but after 2hours of a crying baby who by the way still does not feel good you have to intervine. I would love to be able to just hand Landon off to someone and he be ok for just 5mins. He is not only crying when Jonathan holds him, but that goes for anyone else in the family that holds him. You have to understand that Landon come real short to dying and is still not 100% himself so forgive me when its hard to watch your child scream and cry for hours when all he really wants is his mother. Yes, it can be frustrating beacuse you can't just carry him around the house like any normal baby. We only have so much tubing for the oxygen which makes it hard to get anything done. I love Landon more than life itself and if it seems that I am ill that no one else can take care of him then im sorry. And as for doubting Jonathan's ability to take care of Landon, I am positive that everything would be fine and Landon would be well taken care of.

And again I apologize for stepping on anyones toes.

First time with a babysitter

So today Candace who is going to be our babysitter for next Wednesday came over to learn the ropes of what she will need to do with Landon. I hope she didn't freak out when she left. Honestly I don't think she should have any problems with him, the only issue she will probably have is Landon knowing his momma is not here and cries the whole time. I'm pretty sure I freaked her out when I told her to bring clothes to change into for when she got here and another pair of clothes for any accidents. I think she thought I was crazy, but then I proceeded to tell her that I make my spray herself down with Lysol before she gets close to him. I'm sure I will be a nervous wreck come Wednesday that I will probably not even be able to enjoy the Wizard of Oz with Laura and Tatum. Although I am extremely excited to go see this with them since it will probably be the last time we really get to hang out with each other since Laura is going on bedrest the next day. Well over the next few days pray that I say sane and actually make it out the door Wednesday to enjoy time with my sister and niece.

So today has been a horrible day for me. I had been feeling sickly the last few days and when I woke up this morning I couldn't breathe and my throat was killing me. So I have been doping myself up all day with meds and wearing a mask when im around Landon. Which means that I can't breathe even more when I'm wearing that horrible thing. Jonathan tried to let me sleep in this morning since I wasn't feeling very good and like always that didn't get to happen. I just wish that for one day Jonathan could console him and I don't have to get up from what I'm doing to quiet him down. Partly my fault for Landon acting this way, but its really starting to bite me in my rear now. Thankfully Landon and I laid down around 3pm and he was able to take a nap by himself with no help from mommy or daddy. Unfortunately, when I woke up from our nap I woke up with a migraine from....well you know where. And as soon as I get up, I get asked "Whats for Dinner" My reply was...Whatever you fix! So Jonathan is now in there cooking what I laid out for dinner.

On another good note.....After 3weeks of Jonathan not working he is leaving for Missouri on Tuesday for Orientation with Sitton Company. With this company comes steady pay, family insurance and job security. The other company he was with was so unreliable and hardly ever had any work for him and his vehicle he drove was so unreliable that we never knew if he was going to make it to where he went. I am just ready for us to lead normal lives again. I am so tired of wondering WHEN? HOW? or WHERE? the money was going to come for us to pay the bills. Well I'm hoping that Landon goes to bed again at 8:30 because mommy will be following very close behind him. Well I spoke to soon about having a quiet baby... he is pouting now which will lead to a full blown cry if not tended to right away.

Landon's Check-up

Just wanted to update everyone on how well Landon is doing. We went to the Lung Dr today and they were amazed at how well he is doing and how awesome he looks. What a great blessing that is. The did refer us to the GI department to see why Landon is still refluxing with all the reflux medicine he is on. they have him on at least 3 and we are still spitting up sometimes up to 2oz at a time. They said that they could possibly do two things. One which would be an endoscopy and the other would be a PH Probe. They said someone should be calling us within in a few weeks to set this up. They also increased his calorie intake from 22calorie to to 28calorie per ounce to hopefully get him to gain more weight. Since our last apt we have lost 50grams so they are wanting to make sure he doesnt continue to lose but instead gain. We are getting adjusted to have all the wires and tubes attached to him wherever we go it just takes alittle bit of extra time when we are going places. Landon is really tiring us out right now too. We are sure its from him still not feeling the best in the world and they also think that it might be from him refluxing so much. Whatever it is, we hope it gets better soon. We are ready to be able to lay him down and he be content with being laid down. Right now its you get him to sleep, lay him down and 15mins later we have a screaming baby. Jonathan says its because hes so spoiled and that I don't know how to put him down, but if you saw my house before Landon you would know that its never messy and that I HATE a messy house and right now I have clothes that have been washed since we got home that have yet to be folded. LOL! I keep joking to Jonathan that I'm tempted to place an ad to get a cleaning lady. But then I have to bleach that person down before they come into my house and thats just oo much work for me. Well we go back to the doctor on the 23rd and the 30th so I will update again soon.



As for my friend Nikki and her little girl Payton. Payton is doing just remarkable. Dr. Hassle asked today what happened because they were not doing anything for her and she has done a 360. Nikkis mother replied to the Dr that there are people praying for her everywhere in numerous states. Dr. Hassle said that she liked what they were doing and to let the Prayer team know to keep up the prayers. So thank you to all who have been praying for baby Payton and to keep it up.