TGIF and a few updates...

Really. Thank God its Friday. The weeks are going quite fast. My babies are 5 months old and my big boy is literally a week and a half from going into 1st grade. Not only that, but my sister-in-law gets married in one week!!!! And my sister gets married in three!!! So so so excited about the weddings,seeing family and friends and partying!!!!

This week we tentatively scheduled our sleep study at CHOP for September 23-24. I say tentatively because Dr. Campbell is out of the country for most of September, so we are waiting to see if he can see us on the 24th. Otherwise, if there is a better date for him, we will move it.

Owen has gained a little more weight. He is 10lbs, 13.7ozs. I am quite proud of him, although our docs are not all that thrilled and they want us to see a nutritionist. There was mention of a G tube but I am going to figure that was a mistake made when doctors were consulting with one another, because he is not having a G tube. He eats. A lot. He finished his bottles. He loves fruit and cereal and dislikes vegetables, like all children. Getting food down his throat is not the problem. Its getting his body to gain weight from the food that seems to be an issue. I am not seeing how a feeding tube will help that at all. I am not worried about it, I am not discussing it. Its just not happening and thats the end of that.

Other than that, we had our feeding/speech evaluation for EI. It went well. Not surprisingly, he has no speech delay. At this age, he isn't expected to do much and the very little he is expected to do (i.e. gutteral sounds) he is an expert at! Feeding is another issue, but again, it has nothing to do with getting the food down his throat. Its all about the tight musculature in his face and how he needs work on those muscles. We will get feeding therapy once a week. OT should be starting next week sometime and then we will have all of our therapy ducks in a row.

All in all, its been an eventful August and I am looking forward to September and all these family events and also getting into the routine of school and the babies and figuring out an action plan for Owen. I will keep you posted!

The Pulmonologist and other news

We met with the pulmonologist and all in all it was a good appointment. Owen does not appear to be in respiratory distress, which I knew but its nice to hear from the doctor. In addition, she thinks he looks great. She observed his breathing and did not see any sucking between the ribs or under the ribs until he was upset, which is pretty normal. She wants us to have a sleep study done and to look at the lungs on a dynamic (real-time) MRI but she thinks that he may need no breathing help or if anything, just a face mask (similar to Grandpa Joe's sleep apnea mask- think top gun) and only at night. The tests will monitor his oxygen and CO2 exchange and maybe everything will be just fine. I hope. I pray. It was a very positive appointment though. She does feel that Owen will need the VEPTR surgery, as he does not have much room around his left lung and she said that when babies like Owen are in such good shape, they want to treat him aggressively to give him a chance at a "cognitively" normal life. Neither Nick or I loved the phrasing she used, but we understand and both of us want Owen to have all the tools necessary for as "normal" of a life as possible. (Do any of you hate the term "normal" as much as I do? I hated it when we started talking about my sister with Downs and now I hate it even more. What's normal? Who is normal? Who is the judge of this standard? I digress..) Next stop on this flight....Philly.

As we suspected, we will be meeting Dr. Campbell in Philadelphia. We will have the sleep study done, the MRI and meet to discuss the plan, whatever it may be. I know Owen needs to get bigger and a little meatier, but the good news is that in the last month, Owen has gained almost ONE POUND!!!! I would have to say that the switch to a regular formula and the addition of cereal, fruits and veggies is working! This week, we add meat. I am so excited because hearing that he wasn't gaining was really weighing on me. I am so happy.

The geneticist called this week too. As odd as it is, Nick and I really do have the exact same mutation in the exact same spot. The diagnosis of lethal multiple pterygium syndrome (aka lethal escobar) sticks. I am surprised, but not upset. If we take care of Owens lungs and he continues to do as well as he is, then lethal Escobar is not so lethal for us and we are very lucky. Keep Owen in your thoughts and prayers anyway please.

I really feel so much better now that we met with the pulmonologist. I cannot wait to get the testing over with.

Its not easy to have a baby...

in general. People take for granted how easy it is to get pregnant and once you are pregnant, how easy it is for you to lose the baby. When I first started this blog, it was about our journey in having another baby. I had had two miscarriages in quick succession and I realized how little people spoke of such things. Besides my family (and Nicks mom and sister), I had one person I could talk to and I felt safe talking to her because I knew she had a miscarriage and no one else on this earth could imagine the pain. Plus, if you told people about the pregnancy, you feel a little like a freak of nature because one minute you were having a baby and your whole life, conversations, plans revolved around that and then one minute later...they don't anymore and everything has changed, even though nothing in life has changed except for this one humongous detail: you aren't pregnant anymore. You still go to work, you still run your errands, you still clean your house, talk to your friends, smile at the coffee lady but inside you are dying because you are not pregnant any more. And people do not know what to say and its understandable, but it hurts. You need space and time to grieve and time to cry and time to undo all those plans in your head. However, to the outside world, it was so early, so small, not a sure thing yet, these things happen, you can try again, you're young, you're healthy and medicine has come a long way, don't worry they can help you! And all you want, to your fullest extent capable, is that baby back now.

I am ok about my miscarriages but it took a long time to get here and the addition of the twins to my family. Ok meaning that I am no longer sad. If I think about it, it was a very sad time in my life. But I have gotten past it. I still feel a tug about knowing the second baby was a girl, but I have three sons and I believe I am supposed to be their mother and without the miscarriages, I would not be where I am today. Especially because of Owen. I am supposed to be Owens mom. I never thought then, as I went through them, that I would be here.

It does strike me as odd that as much as we do not talk about miscarriages openly (or some of us don't, apparently I do now) EVERYONE I know (you know) has a story. If not their mother, aunt, grandmother, then their best friend, their sister or themself. I am almost in shock at how often the topic crosses my path. In my personal life and in work. From friends and family to clients who potentially have a case stemming from or as a result of a miscarriage. It feels so incredibly common, yet people are hurting and hiding and not supporting one another through it because its so uncomfortable to talk about. Miscarriage is not taboo. It happens all the time. For genetic reasons, for health related reasons, for absolutely no reason.

Additionally, and especially for those who have tried to get pregnant, lost a pregnancy and then went through the agony of trying to get pregnant again without success or with success after much effort, its so hard to have a baby! Not for everyone of course. Lots of people concieve without even trying (I know this from experience). Kids get pregnant, people get pregnant and don't even know it. We have reality TV shows about it (Teen Mom and I Didn't Know I Was Pregnant). However, lots of people try and try and use ovulation kits, trackers, basal temperature tracking, etc... to chase that egg down and attempt to successfully fertilize it by making your husband have sex with you on various days of various months on end. Yep, I did all of the above. And its not easy. It takes concentration, calculation, perserverance and the extremely powerful want for a baby. Others have it tougher than that: IVF, medications, surrogates, adoption. It is so hard. I feel like those of us who have gone through these things should write a self-help book. A guide to dealing with the inability to easily procreate, even though everyone in the world says and makes it look so easy and natural. Ha, this would be followed by my book: NO BREASTFEEDING ISN'T EASY, NATURAL OR FUN. (I have nothing against breastfeeding, I just did it for 4 months with twins. I am just saying its hard.)

Anyway, I guess thats long enough up on my soap box! Just something I have been thinking about.

Owens Ribs

A couple of weeks ago we had a chest x-ray for Owen. The orthopedist ordered this because Owen is not gaining weight fast enough and sometimes in Escobar babies, this happens because they have very small chest cavities and/or the scoliosis makes it difficult for them to breathe. In such a small baby, that effort to breathe causes them to expend a significant amount of calories thereby making his ability to gain weight a problem. We really were hoping that this would not be the case with Owen, but the doc called us yesterday and it is. Owens left lung does not have enough room and it needs to be fixed. We have to meet with the pulmonoligist on Thursday of next week. Today I have to make our appointments to go to CHOP (Children's Hospital of Philly) to meet with Dr. Campbell to have a real time MRI and sleep tests done to see what Owen's breathing capacity is. Depending on the results, we will be figuring out when we will schedule (or hopefully how long we can put off) surgery. The surgery is called VEPTR or the titanium rib project. We are fortunate enough to be able to meet with Dr. Campbell himself as he is the inventor of the titanium rib. Our ortho and our pulmonologist trained with him so one or both will assist in the surgery, whenever it may be. I feel a little defeated by all of this. Its huge surgery and once its done, every 6 months they will go in (surgically) and adjust it. I cannot tell you how badly I wish this wasn't the case. The doctor said, in terms of a lethal diagnosis, if anything were going to go wrong, it would be related to the lung and the difficulty breathing and therefore it must be fixed. I don't really have any positive thoughts or words on this. I am just upset. I don't know why this particular issue has me crying and so down, but I guess I felt like I was at my limit before this call came and now, I am certainly there. What my baby is going to have to face in these next few years is breaking my heart and I know I can't let him know that and I have to put on a brave face and be strong for Owen. I just have to find some strength because today I feel as though I have run out.

Dear Gavin,

I am sitting at work today missing you. I have been looking around my office at all your pictures. Pictures of you as an infant, pictures of you as a toddler, pictures of you now. Even pictures you have made me of us. I miss my boy. I miss you because I am physically away from you but also, I miss you and me the way we were before the babies. I miss scooby doo in bed every night. I miss going to all the kid movies with you. I miss driving you to school every morning and discussing all the important things in life, like which type of VW you will have when you are older and the importance of bird nests. Life is different now that the babies have arrived and I miss the little boy that I thought of as my baby. I know you are mad that you have to share us. I am sure when Alyson came along, I was pissed too. I know that 5 years was a long time to have both of your parents undivided attention, praise, hugs, kisses, cuddles, conversation. I know it must feel bad to watch us coo, kiss and cuddle with not just one baby, but two. I am not sure how to express to you that you have not been replaced. We added to our family because we love you so much and have loved being your parents so much that we wanted more of you. Babies just like you. It probably feels like you are getting yelled at a lot. It probably feels like mommy and daddy (moreso mommy) has no patience. I know it feels like all we ever do is ask you to put a pacifier in someones mouth and please hand us a spit rag and by the way, get out of Owen or Calebs face. I know. This is new for mommy and daddy too. We are learning how to be a family of 5, how to have 3 kids and how to attempt to divide our time between all of you. How to balance and keep things calm. How to operate on no sleep. We do not think you are bad or annoying. But I know that it must feel that way because you are five and you asked me if you are annoying. It broke my heart. You are not annoying. You are my baby, my heart, the first child of mine that I fell in love with. You are smart and handsome. Funny and imaginative. You are fiercly independent and equally dependent at the same time. You are like me. You are like your daddy. I am sorry for how tough this has been on you. I know you begged for a baby and you got two and one with many needs beyond the norm. I know its been a tough couple of years. But I promise that it will get easier and different. It will be more fun and we will all find our groove as a family. Its getting better already. I miss you little boy. I love you more than anything on earth. Nothing I have ever accomplished is as special or as worthwhile, as the day I had you.

Love you,
Mommy

Back to work and the plan for August

August is turning out to be a crazy month. Nick is home alone with the kids for this week and then the babysitter starts. I am looking forward to this because the twins need to get used to her and she needs to get used to them and everyone can do this while Nick is there to help. Nick can take Gavin to do some quality outings and Soledad (the babysitter) can attempt to get the twins on a schedule that works for her.

However, there a few kinks in the plan. Caleb has PT now on Tuesdays and Fridays when Owen does, so Nick is going to be bringing both babies to the city and Owen has many appointments. Besides our normal routine of casting, PT and OT, he has to see the eye doctor, have a chest x-ray, the neuro-muscular doctor and the pulmonologist. The neuro-muscular doc is pretty much a second opinion to make sure we are covering all of our bases and just to see if anyone else has any ideas that may help. The eye doc is to make sure his vision is fine and to see if the quality of muscle in that area can be assessed and the pulmonologist and chest x-ray is to make sure that his chest area is not too small causing issues for his lungs. The orthopedist wants us to check this out because he isn't gaining weight fast enough and she says that its possible if he is having a hard time breathing or is working hard to breathe then he could be burning a significant amount of calories which would be affecting his weight because he is so small. We shall see.

In other news, Owen had another tenotomy today. He is doing well. He is sore and cranky and I think he had a much harder time this time because he is bigger, older and just plain tired of this process. I am glad its over and hopefully this time we can achieve full correction and hopefully it won't recur at all or at the very least, as fast.

Tomorrow I am back to work. I am having such an issue with letting go of Owens appointments and being able to have that face to face time with his doctors and ask as many questions as I can. I know it will be good to get back to work and have a little time to myself. I know Nick can handle the appointments. I just wish I could be there. This has been my job for the last 4 months and its hard to just stop for the month of August.

And lastly, there is about 4 1/2 weeks until my sister-in-law gets married and 6 1/2 weeks until my sister gets married and I am so excited for them and for the weddings. I think both are going to be a great time. Besides having to shop for dresses for both (which after having twins, you can imagine, is a real downer) I am really looking forward to seeing two of my favorite people get married to two wonderful men. Its a very exciting time for our families. And I cannot wait to see my boys all dressed up.