Annie Lettenberger of Jaxon and Brady’s Journey

This week we got to talk to Annie Lettenberger about her adorable boys Jaxon and Brady. The boys were born at 31 weeks and Annie’s blog covers all the ups, downs and in betweens of life with her boys (Jason included). If you are on The Nest message boards you are probably familiar with her story, for those of you who are not check out the interview and be sure to stop by her blog and leave her note.

Tell us a little bit about your birth story

Due to the fact that I was carrying Monoamniotic twins, I left the life I knew and checked into the hospital on May 21, 2008 and made many friends along the way with hospital staff and all my best girlfriends online on the MULTIPLES board on The Nest. I’ve counseled many other women on that online community who feared the same diagnosis.

I had lived every moment of that stay knowing that at any time they would have to take the boys if one of them distressed on the monitors. We were watching my little baby (Baby A – Jaxon) very closely since he had much less blood flow in his cord due to tight knots in his cord. His weight was significantly less than the other baby so I was constantly worried about him.

I had been in the hospital for over 7 weeks and had my c-section planned for July 17 (the maximum gestation time allowed for my condition). Three nights before this anticipated date, I was conducting business as usual and had gotten ready for bed along with my 10pm nightly monitoring. My husband kissed me and left the room to go home for the night right as my nurse was entering to hook me up to the monitors. Within moments of being hooked up, Jaxon’s heart rate plummeted and my room was filled with doctors and nurses. I’ve never experienced the feeling I felt when I knew the baby was about to be gone.

They said I had to be put under immediately as they started to rush my bed into the operating room. I didn’t even know if they had contacted my husband as they were running my bed down the hall, trying to put in an IV and just pulling up my pajamas to perform the surgery. I was hysterical and not able to see since they pulled my glasses off my face and I didn’t know if the doctor on call knew if they boys were monoamniotic. I had a beautiful day planned for my surgery with my favorite nurses and the specialists there to perform it, and of course my husband at my side. None of this happened. I thought the doctors were cutting me before I was put under and then I was out.

I woke up as they were pulling the tubes out of my throat in the recovery room. My husband was standing next to me and came close to my face so I could see him. He looked exhausted and I suddenly realized where I was and felt paralyzed by fear. He suddenly held up a micro-preemie diaper and told me that we had a baby boy in each one of those diapers. I sighed the biggest sigh of relief I’ve ever had my whole life. He also whispered that they cut my from the belly button down to get the boys out. Jaxon was born unresponsive and only scored a 1 on his first two apgar scores. Apparently his cord had lost all blood flow due to the knot between the boys. What a catch to be on the monitors at this time!

This was definitely not the birth I had hoped for or planned. I will always mourn the loss of the “moment of birth” that I so looked forward to all those long days in the hospital. But I can’t really complain since my boys are here.

Brady came home from the NICU just after 4 weeks, and Jaxon after 3 months with some complications that have led to further hospitalizations. Jaxon hasn’t known a life yet without feeding tubes or oxygen due to a severe case of infant reflux. And so our journey continues…

Can you talk a little about Jaxon?

Jaxon has what is believed to be severe infant reflux (GERD). Around the time he was considered “term” and still living in the NICU, he started vomiting his formula. He had an NG tube and was taking about half his food via bottle. He was released a few days after this was occurring. We were so excited to have him home at almost 3 months old. Sadly, those 10 days were the scariest days of our lives. Jaxon’s vomiting was so bad that he was readmitted 10 days later for “failure to thrive due to extreme reflux”. He weighed about 5lbs at 3 months old. He was so sick and weak, and when I look back at those photos, I cry. He was placed back on oxygen and this is when we started our fight with reflux. Fast-forward to today at over 9 months old and it’s still a daily battle. Life is better, but it’s still filled with doctors, specialists, home nurses, therapy, medical supplies and questions. The specialists feel that Jaxon’s vomiting is a bit too extreme at this age to just be reflux, so we have some upcoming tests (MRI, Motility) to see if there are bigger underlying problems. Again, we just need to keep the faith that this is “just reflux” and he’ll know a day without feeding tubes. His current progress is bitter sweet. He’s doing a lot better, but at the same time, he has no food in his stomach since his current tube bypasses it, and yet he still vomits often. So when we try to go back to food in his stomach, will everything go back to how it was? Time will tell.

Any tips on surviving sleep deprivation?

My husband and I certainly know a little bit about this. At one point Jaxon was up about every 30 minutes (if not more) through the night vomiting. It got to be so bad, that we started sleeping in separate rooms and taking turns with each baby. Brady of course was the “easier” baby to take overnight with just a few fusses for his pacifier, while Jaxon was the “harder” baby and you went to bed knowing you’d be up non-stop. We did this for a few weeks so each of us could at least get a few straight hours of sleep every other night. These nights were the hardest and the most challenging and caused us to have our closest breakdowns. We also learned to love coffee 🙂 And we agreed to not hold grudges over the 3am bickering that WILL happen!

Honestly, what got us through it was the promise that it would get better. When it wasn’t getting better, Jaxon was hospitalized for 2 weeks and came home with a GJ tube (rather than his G tube). His food bypassed his stomach and now goes directly into his intestines. After this and some chiropractic work, he’s now sleeping much better. Just keep the faith that it will get better.

Does Jaxon respond/feel better when Brady is around?

You would think my answer here would be yes. Well, the answer is actually no. Being that the boys were separated the first 3 months of life by a hospital and even at home due to the tubes, the boys have never to this day slept next to one another. For a while Jaxon would cry when we put the boys by each other. Only in the past few months have we noticed actual happiness when they are with each other. Brady was always interested in Jaxon, but Jaxon did not always reciprocate and we always hoped it would get better, and it definitely has. I think Jaxon does better in general being home with his family, but still doesn’t actually cuddle. He loves being held, being played with, but even those took awhile. The hospital it seemed was institutionalizing him and the harsh winter quarantine hasn’t helped either. Our family lives a few hours away, so a car ride that long for him has always been impossible so far. We’re hoping this summer will help him socially. We’ve already seen a huge improvement, which may be due to him feeling better too. He sure does like to smile like his brother Brady now!

How has your life changed since becoming a MoM?

No one has ever asked me this before. I guess like any mother, your life changes the moment you’re pregnant and you actually feel the need to protect and care for the child above anything else in your life. Now being a MoM, it just doubles those feelings. I’ve put my entire life on pause for these little men, and have never felt like I’ve missed anything. From living in the hospital for a total of 8 weeks, to being in the hospital every single day after their birth for over 3+ months, to being quarantined to the house for the following 6 months – it’s all worth it. I’ve also realized that I can handle less than 4 hours of sleep a night consistently. Our story has a lot of hardships, but it also has a lot of love and let’s not forget, two amazing little boys. My life has definitely changed because for once I don’t care that my nails look awful, all my clothes have vomit stains or that I haven’t gotten to shower as much as I would like…all I care about at the end of the day is that both boys have gotten the best care possible. This is by far the hardest “job” I’ve ever had in my life, and by far the most rewarding.

Any advice for MoM’s and Dad’s that may be going through the same thing?

You know your child better than anyone else. If you suspect something isn’t right, go to your doctor. If you doctor doesn’t listen, keep going until someone does. Every doctor and specialist we’ve seen have been great and take Jaxon very seriously, although our last Neonatologist kind of pushed Jaxon out of the hospital during his last days. We were so excited to have him home, that we overlooked the fact that he should NOT have been taken off oxygen and sent home the next day or that his vomiting was increasing and that he was not at a safe weight yet. After one day of being home I took him to the ER, and then to our pediatrician, who then sent us to a specialist, who then readmitted Jax. I think you have to PUSH for the most comprehensive care possible for you child, because if you don’t…no one will.

I have one twin with a normal case of reflux, and while that in itself proved to be challenging for the first 6 months, I want other parents of reflux to know that it DOES get better. For a while I started to resent hearing that and felt like it was a lie. You need to surround yourself with friends and family who will support you and understand your need to devote your life to that child. You will slowly but surely start to feel comfortable taking your friends and family up on their offers to help care for your child(ren), and at some point, take it! We’ve just started doing this, and it really does make a BIG difference.

For parents with children who actually vomit with extreme reflux cases, consider this a huge virtual hug. I truly believe that any parent caring for a child with special needs of any kind, deserve a kind word, and a badge of honor declaring them a warrior parent.

Thank you Annie for sharing your story with us! Have a great day, MoMs and Dads!