Saturday, January 21, 2012

Update on life in the Maxwell house

As usual much has happened since my last post so I will break this post up into the main events that have conspired since then.


In my last post we had just discovered complications with Ryan's insurance company. Praise God I can tell you that we now (hopefully) have it all worked out, after many phone calls and much confusion I am now for sure covered under Ryan. It is illegal for a company with a group plan to not provide coverage to someone with a pre-existing condition. As I'm sure you understand, that was a HUGE relief to get figured out, but not easy and I'm sure it won't be the last of our insurance issues, but for now we have peace.

Landon's 28 week appointment

Landon had a big doctors appointment this last Thursday. We ( being me and Landon, my appointments are always while Ryan is working) first went to the hospital for a fetal echo (this was his third so far) It seems with every visit to Dr. Fernandez I have more confidence and ask more questions. I tell myself that asking questions is one of the greatest ways to gain strength through this. Knowledge is power, and I do feel like my understanding of our Landon's heart is growing. I did not ask to be a heart mom, but I am. I have always been destined to be one and everything I have experienced in my whole life has been preparing me to be one. I would not have chosen this title but it is now who I know I am and I will always be a heart mom. With this title carries great responsibility. It is my job to learn whatever I can about my child and questions are a great means by which this learning takes place. So I lay there and listen and at times interrupt to ask the Dr. what something is or if He can explain what he just told the nurse to me. I know now that the right side of Landon's heart is hypo plastic, which means it will not grow. He will essentially go through life with half a heart. This realization was very important for me to make. When it comes to Congenital heart defects the one most talked about and more common is Left Heart Hypoplastic Syndrome. This is a condition where the left side of the heart does not develop. I thought Landon had something completely different then this because most of the focus right now is on his pulmonary Artresia. I feel as though it may come across that I am babbling about medical terms and not making much sense to anyone else, but I think it is important for me to continue to document everything I learn. So as Dr. Fernandez explained to me the first surgery Landon will have (at six days old) is only a temporary fix. It will not cause the right side of his heart to develop. News like this is hard to hear, but I know that the more me and Ryan know the better we can prepare and take care of our little man. After the fetal echo was done the Dr. told me that everything looks good, but he has acquired more fluid around his heart. This is not good. Fluid around the heart (Paricardial Effusion) is what the doctors have been most worried about while Landon is in the womb. If it reaches too high of a level, much pressure is placed on the heart and he won't receive enough oxygen to grow... if this happens he may not make it to birth. It really freaked me out hearing this, but the Dr. assured me that it is now only at a level where they are concerned and will want to begin keeping a closer eye on it. He told me that he feels very confident that it will be ok because I will be going to Minneapolis in a couple weeks. He told me he will let Landon's specialists there know about the changes.
So after that I headed over to the clinic and had my ultra sound and met with my doctor. I was determined to ask them to get Landon's weight at this ultra sound since they didn't last week. So I told the young nurse who was doing the ultra sound that I want to know his weight and she told me that she was planning on getting it that day :) I LOVE being able to see Landon every week. I know this is a blessing most moms don't have while they are carrying their children. I watched with amazement as my little man was blinking his eyes. I had just read in a book that babies begin to do this at 28 weeks and I actually got to see him!! I was so excited!!  He is so beautiful! When she had finished she told me that he weighs 2Ibs 8 oz. This thrilled me! He is growing :) When I met with my doctor she shared in my excitement. She told me that Landon is now in the 90th percentile for fetal growth at his age :) Our little guy is already breaking the norm and surprising the doctors. So although we received some worrisome news we also got some very very good news that day.

Second meeting with Roxanne

After my very long morning at the hospital and clinic I got to work around 12:30. I finished my shift and then hurried home because we were expecting Roxanne to come over to talk about some things and sign some papers. Another woman we had never met arrived first and Roxanne came shortly after. The new ladies name is Kristen and she explained that she works with the Department of Human Services with Developmental Disabilities. She discussed a lot of things with us. There are services that the government and the state fund that provide support for the parents and children with disabilities. This program that we are now in will set us up with a person who will handle Landon's case for the first three years of his life. After Landon is born we will meet with our case worker and write up an individualized family service plan for our family. We will together decide how often Landon will need to see his caregiver and what kind of services he will need. To our understanding we will be able to choose Landon's caregiver. Kristen told us that most care givers become a part of the family and most families are sad to have to say good bye to them once the three years are up. His caregiver will come to our home and the interactions will be done around our families normal routines and daily activities. Kristen also talked to us about Medicaid and the services they will provide for us. Medicaid is what will pay for Landon being in the Early Intervention program. It will also help with the cost of any direct therapy, equipment or other medical needs Landon may need. I can't tell you what a relief it is to know that Landon will have these special care opportunities and that we will be able to afford to give them to him. She also told us that they sometimes provide at home care for a child who is not medically able to be around other children so that the parent can go to work. This was very surprising to me. I don't know if I have written it on here before, but lots of kids with Congenital heart defects, especially ones as rare as Landon's, are instructed by their doctors to be kept out of day care or other places where they would be susceptible to sicknesses until after their three surgeries are completed, about the time they are three years of age. I had given up on our plan for me to return to working at the day care after a year, but if Landon was able to be cared for by someone we trust in the safety of our home, I think I might be ok with going back to work part time maybe a couple days a week. This realization was very exciting for me because I love my job and it opened up the idea to me that maybe I can get my internship accomplished and get my degree sooner then I thought. Things like this show me that we can still dream. Yes, our life will be different, it will be hard, but it will be beautiful. We signed a bunch of papers and then said our good-byes. After they left I just hugged Ryan. We both understood the relief that was flooding the others heart. God is so faithful, He has provided for us in such incredible ways. May His name be praised!!

There is much more to write, but I am tired and craving my Saturday nap :) Will write more at a later time. Thank you everyone for your continued thoughts and prayers. Thank you for not forgetting about us. Your words of encouragement are priceless. It may seem that we are adjusting and doing just fine... and we are... but I will not tell you for a second that this is easy or ideal. We are still completely reliant on prayer. We are doing everything we can but nothing takes away our helplessness against this. Our hope and every ounce of our strength is from God.

Landon's proud Momma


emmy said...

Very glad to hear the good report on Ryan's health and the great report on how God is providing for you financially. Keeping you in my prayers.

The K. Family said...

Thank you again, so much, for sharing! We love hearing your updates and having a better idea of how to pray for your little guy. God will take care of you! Enjoy this newleywed time with Ryan before life gets really, really busy!

Marnie Swedberg said...

Hey, Heart Mom! Ya know? It's the perfect term for you, Natalie! You have such a HUGE heart, enough for 2, really... but God is giving Landon 1/2 one of his own, just for kicks!

Do keep dreaming, beautiful girl! You and Ryan just keep dreaming, loving each other and trusting God!

Love you 3! Marnie