Update on the boys

Wow, time flies when your having fun. Seriously I can't believe 2 years ago that my sweet precious strong handsome miracles were born. The last 2 years have been crazy busy with so many ups and downs. God has blessed us being their parent's. I can't wait to see what this year has in store. As of right now we have one big surgical procedure planned for Jacob that is October 6th, Jacob recently almost 2 months ago got diagnosed with EOE (Eosinophilic Esophagitis) it is Eosinophilic (ee-uh-sin-uh-fil-ik) esophagitis (EoE) is a recently recognized allergic/immune condition. A person with EoE will have inflammation or swelling of the esophagus. The esophagus is the tube that sends food from the mouth to the stomach. Jacob is allergic to soy, dairy, and beef. So we are constantly having to watch everything he takes in by mouth. Along with EoE he has had strep throat 5 times this year and so while he is under for his EDG with biopsies they are doing a T&A along with replacing his PE tubes that are full of granulation tissue. Jacob's throat from the EoE is pretty  bad. Jacob also just qualified for a portable suction machine that will make our lives a tad bit easier. Jacob requires a lot of suction due to his chronic lung disease, the cerebal palsy, and the EoE. Both boys are in daycare full time and they love it, they both go to a special daycare that is for kids with medical or developmental issues and you have to qualify to go to this daycare. It has been a blessing and they are like family. The month of September is already plenty busy tomorrow the boys and I are going on a daytrip with one of my best friends to go hiking for the day. Next weekend is DH's family reunion, the 19th is our only free weekend in September and then the 26th is DH's company picnic and then we are just relaxing at home the weekend of the 3rd of October as Jacob has his surgery on the 6th and we be inpatient probably 2 nights. The 24th of September we see Jacob's amazing GI Dr Prince just for a follow up since we have had to change some med doses around. We are constantly busy or on the road. Tomorrow I can't wait to get away for the day of course we have to pack all of Jacob's medical supplies. Hope that everyone is doing well. 

update on our crazy busy lives

I wanted to take a few minutes and update on our crazy busy lives. I just realized when I logged on to my blogger that it was in February. We have had so much happen since then including being flown to children's. March was pretty quiet around here, we also fired our old ped as he made the comment to me that being a stay at home mommy is very easy and I was like okay I said so you obviously have never had a child with medical issues such as Jacob and Joe's. I was like I am on the phone constantly with children's or some of their doctor's. We hired Dr. Wilbur who is amazing with the boys and his office staff goes above and beyond for them. April was very very busy. April 12 is were I will start the boys and I went on a play date with a good friend and they had runny noses and so I didn't think anything about it and so that Monday knowing Jacob's history we started doing albuterol and just making sure his team in LR knew what was going on. The 14th like any other day Jacob had therapy but had home health come by first for a weight check and they listened to him and said that he was clear but was coughing a ton, I sent him to therapy and when I picked him up their nurse who is amazing was like his 02 was running 95-96% and I was like okay at that point I wanted to make sure his pulmonologist knew what was going on, so I called and gave them an update. They called me back and wanted a chest x-ray the next morning and so I was like okay once I get those results I will give you all a call and you can decide on what you guys want to do. That night was not a good night Jacob was having issues breathing so first thing in the morning I called the ped's office and they are like can you be here by 9:15 and I was like yep, so we arrived and they check both boys in. Dr. Wilbur comes in and listened to them and steps out and says nurse alert which means he needs a nurse and he ordered her to get albuterol and got that going and started writing order's at that point I knew it was not good and he was like what hospital do you all want to go to I was like ACH and so he stepped out and made some phone call's next thing I know he says angel one is coming to get them. He sends us to the ER to wait for Angel one and when we get their things aren't good my dad is arriving to help Bob out so that I can run home and grab some clothes and stuff for the boys. When I get back they have Jacob an IV started and have him on oxygen because his 02 keeps dropping and I was like okay, so I give pulmonology a heads up that we are being flown their and their like okay. They tried I mean 6 times to get an IV on Joe and were never able to get one and I said enough and to wait for Angel One. Joe was also hooked up to oxygen. I stepped out of the room to make a few phone calls to let my boss know what is going on and so when I got back Angel One was their and they let me fly with them. Long story short we got released after 24 hours and only to have Jacob re-admitted via the GPC. May was really busy here with multiple follow up appt's. June has been busy with appt's also. July we will be spending a week in LR for some procedures for Jacob and for multiple follow up appt's, I am sad because Bob can't go with me and so my mother in law is going with me. 

2015

Wow, I just realized how long it has been since I posted last on the boys. Our lives continue to be hectic, crazy busy. It seems like most every other week  any more that we are at our amazing children's hospital with Jacob. Next week we are back their for 2 appointment's one with one of his regular clinics and one with one of the new clinic's that we have added to Jacob's medical team. He has so many doctor's their at children's and they are all amazing. Since we are in RSV/Flu season we have to take extra procautions with Jacob because of his lungs. Unfortunately those extra procautions weren't enough last week and he landed in the hospital with the Flu, croup and bronchialites. He was a pretty sick little guy. He also has a new diagnosis that we have known for quiet some time that was very possibly and it is Cerebal palsy.
All of the clinic's that Jacob see's right nww are all on the same page with his diagnosis and we will continue to strive for the best for Jacob no matter what it takes. We have an amazing medical team at Children's. Unfortunately our pediatrician here in our local town sucks and his nurses are rudiciulous and when they say that they will call you back they won't. Jacob has an appt with his tomorrow and I will not be nice to the nurse because when I called yesterday she told me she would call me back and she never called me back. It goes same day same story with the ped's office.
Sorry if I am a debbie downer today I have lost my trust in some people especially in DH's best friend who was in our wedding we had an earlier situation today that just makes me sick to my stomach thinking about it. He had come over earlier this morning to see the boys and I and then while I was gone running a few errands with out the boys my mom was here, the jerk supposedly lost his wallet here and stole some stuff from us. We found the evidence in our bathroom. The cops were called and a report was taken.

medical conditions of our boys

I wanted to write this story for all my fellow SAIF ladies that haven't followed our story. Jacob Alan and Joe Robert were due to be born November 15th 2013, but they arrived 12 weeks early on August 31st, 2013. I had pre-E and HELLP syndrome, along with gestational diabetes, along with pre-term labor that led me to be hospitalized several times. Jacob Alan and Joe Robert being that they were 29 weekers, that spent 3 months in the NICU at Baptist Med Center in Little Rock, Arkansas. We live 3 hours from Little Rock and that became our temporary home. Little Rock is still our temporary home. When ever we travel we have to take a nebulizer with us, inhalers and just one separate bag for medical supplies. We always keep a bag packed in our car for appt's with extra supplies.

 Jacob had 2 brain bleeds and 1 PVL. He has chronic lung disease, has a very mild case of cerebral palsy, has dysphagia to were everything he takes has to be thickened to honey consistency, had 2 bi lateral hydrocele's and bi lateral hernia's, has reflux, he has plagiocephaly, and torticollis. He also get's blocked tear ducts.  Jacob is constantly in and out of the hospital. Jacob keeps both Bobby and I very busy. He has several different specialists ranging from Neurology, pulmonary, ENT, Helmet clinic, urology, eye clinic and so many other clinic's and specialists. Jacob was on a vent for a month, he has home health, he get's monthly RSV shot's from November to March. Jacob also has had 6 blood transfusions and 1 platelet transfusion. Jacob's hospitalizations are anything from bronchiliotis, to flu, to dehydration, to weight loss.


Joe: was on a vent for 3 weeks, he has chronic lung disease, he has reflux, had 10 ear infections before he got his tubes in. Joe see's a few specialists but not as many as Jacob. Joe also get's monthly RSV shot's.

God has truly blessed Bobby and I to be their parent's and I am not saying it has been easy it has been very hard, frustrating and emotionally, stressful, being their parent's. We would do what ever we would have to do to make sure our boys are happy.

updates

So were has the last 2 months go: We have been super duper crazy busy. Our boys turned "1" at the end of August and had a great birthday party. We have had many trips back and forth to LR and are at least home for about 2 weeks before our next trip. On the 22nd both boys will be having PE tubes put in for recurrent ear infections. Joe will be getting his adenoids out and Jacob will be having 2 different scopes done, which he will most likely be kept overnight just to make sure everything looks good since he does have lung issues and had a rough time with his last surgery. Tomorrow I am having shoulder surgery my 2nd one in less than 3 years. Both boys love playing with each other. We have lot's of people ask how we manage dealing with two kids with medical issues we just make it work yes, their are times were we struggle, but we are doing this because our boys depend on us so much. We often make trips to LR and it has become our 2nd home and we have made some amazing friends and so if we have a spare minute while we are their we always make an effort to see them.

Joe: is mister talkative, he is taking 10 steps and is getting in to everything, he has had 9 ear infections, sleeps the majority of the night thru, eat's baby food and drinks milk and is totally off formula.

Jacob: is doing really good, he just started learning how to sit up on his own, he is mister rolly polly, sleeps thru the night, had an ER visit, eat's a tiny bit of baby food, and drinks formula. He is on ear infection #4.
                                                                        Joe Robert

                                                                       Jacob Alan

12 months and updates

As I sit here on this beautiful August night, Jacob is sound asleep in his crib and Joe is sitting beside me drinking his bed time bottle, my rock star hubby is doing some work stuff and watching the St. Louis Cardinal game. I am sitting here also glancing at the Cardinal game and just thinking about how the last year has changed our lives. Our handsome boys in just a few short weeks will be "1" how can that evenly be possibly. Our lives keep us constantly busy. It seems like no days are the same. We have made many trips to LR which has become our second home the last few weeks. We have "1" more trip their for August and then we are done til the 19th of September.

Lets get on the boys and how they are doing:

Joe is doing great, has 4 teeth, crawls everywere and is really pulling himself up on anything and everything. his favorite words are mama and dada. We have been sleep training him and he won't sleep in his crib only his pack and play in the guest bedroom. He is trying to stand un assisted. He has had 5 ear infections. Joe also will be getting speech therapy since he has mild dysphagia.

Jacob: is finally gaining weight. He keeps us plenty busy with many medical appt's. Jacob has had tonsilitis the last 2 weeks and was getting 1 weeks worth of rocphen shots. We did those as a procautionary thing since Jacob has a history of respiratory distress syndrome. He has been in his rock star helmet about 2 months now. He is starting to try and sit up and crawl. He get's PT, OT, Speech therapy since he has really bad dysphagia, and has a developmental therapist.

I still can't believe that almost a year ago I gave birth to our miracles. Bob and I are doing great. It seems like we never slow down. Please continue to say a prayer for all the kids in the NICU's all over as we know it isn't an easy journey and I would be lieing if I said it was easy because it is not. But we are so blessed.

last week of the boys being 8 months

Here's what we did at 8 month's : We had our 1 week inpatient stay at ACH, we got to meet our handsome sweet nephew Logan who hammed it up for me, we got to say "Happy Mother's Day" to mommy and then we got to spend Memorial day weekend with our granny and papa. Life keeps us plenty busy. Jacob also made 2 ER visit's this month one to our local BS hospital for respiratory distress and then one to ACH for Jacob's bi-lateral hydrocele. We also got to stop in to the NICU and see everyone and give some families some encouragement when they needed it the most. We also got to stop in and see mommy's Wonderful OB Dr. Kevin Breniman who mommy has chosen if she does get pregnant again. Jacob also got fitted for a rock star helmet which we get next week, it's camo colored and then my mom is painting Jacob's name on it. Joe also is crawling at full speed, and has 2 teeth and is eating baby food 3 times a day. 

Here is our handsome nephew Logan

Here we are the first week of May!

Some of our amazing NICU team. These people are simply amazing and I truely believe they are the reason why Jacob is here today. They have a very hard job. We Love you all. In this pic is Kristina, Reecie and Dr. Z!

Mommy had to take a pic of us right before we headed to granny's for Memorial Day

This next month we will: get to meet our auntie Jennifer, and cousins, our auntie Jeannie and John, and cousin, go out on the boat, and get to see some more family and play

On Saturday the boys turn "9" months. The next week is plenty busy with many medical appt's starting tomorrow morning with Jacob seeing our ENT doc for his swallowing issues and then seeing our amazing new ped who I have tons of questions for since it still seems as if he is aspirating even with thickened feeds and who we see for his chronic lung disease, on Wednesday we have home health and I have a PT  appt for my shoulder, Thursday my mother in law and I will be heading to LR to meet with Jacob's urologist about his bi-lateral hydrocele which was repaired in February and has come back and so he will most likely be scheduling surgery soon on it and then Friday I have an appt with a foot doctor.