Saturday, October 18, 2008

This is just the beginning

Yesterday we had a "care conference" with some of the doctors in the NICU. It was a very disheartening meeting for me. First of all, they (or just this one doctor) said that we aren't allowed to touch Ezekiel. He is on "contact precautions" because he has MRSA, and so to hold him, touch him, straighten his blanket, stick his paci back in, we have to be wearing a gown and gloves. He can't have any skin to skin contact. I can't tell you how much this absolutely breaks my heart. And it infuriates me. Kangaroo care (skin-to-skin contact) is one of the MOST IMPORTANT thing for any baby, especially a preemie. There is this new doctor (We will call her Dr. Know-it-all, or Dr. Kita. I don't know her real name) who thinks she can come in and change everything around, and so she is the one who told us no more skin to skin contact. Before she came around the doctors just said to be very sure to scrub our hands well before and after holding him, and not to touch anything else in the unit with "dirty" hands. But now she is apparently the new final word. She tried to act comassionate saying things like, "I want you to be able to kangaroo your baby as much as do". But obviously that cannot be true.

Here is the story with MRSA. At least 50% of the general population has an MRSA colonization (ie they carry MRSA but are not infected by it). The percentage is higher in hospitals, because MRSA is mainly found in hospitals... it's a hospital disease. Being infected with MRSA is a totally different thing. Being infected makes you very very sick, and Ezekiel was infected. Now he is better-- he has had 3 negative blood cultures saying he is no longer infected. However, he still has a colonization. Here's the double standard: if most people in the hospital are colonized with MRSA, as Ezekiel is, why is he on contact precautions and everyone else isn't? I'm going to ask the doctors today. And the only right response is for them to either take Ezekiel off or to put themselves on contact precautions. Am I right? I'm right.

The worst part of the conference, though, was when Dr. Kita explained to us that our NICU experience is just the beginning. She told us that for the next 3-5 years Ezekiel will have to see all sorts of therapists. Speech therapists, physical therapists, sensory therapists, every kind of therapist. She said we would have to take him in for therapy multiple times a week, or sometimes people will come to our house. We will have to have home health care help with his oxygen at home. (according to Dr. Kita he will "definitely" come home on oxygen. Pray that he won't need to do this!). This is all just because he was premature. There is nothing specifically wrong with him that they currently know of on which Dr. Kita is basing these statements, other than the fact that he was born early.

Now, I had a nebulous idea floating around in my mind that raising a preemie would be a little different than raising a full term baby. I've at least read a little bit about it. But I kind of thought that it wouldn't be that different. You know, a few extra doctor appointments, maybe he would need glasses, he might be a little shorter or smaller. According to what we were told yesterday, we are in a whole different ball game. We have a "special needs" child. We need to have "early intervention". I absolutely felt slapped in the face. I know some of you are familiar with some of these things. I know very little about what it will be like to have to live with all this. And of course, it could just be that the doctors are giving us the worst case scenario when they emphatically say he will need all this therapy and help.

This is all about perspective, too. Daniel has a different perspective. He was a "special needs" kid. He was in the special-ed classes in grade school. He was diagnosed with several learning disabilities. And now he is incredibly intelligent, as most of you know. He says that all of the one-on-one attention he got as a child helped him a lot. Of course I want to give Ezekiel the best chance possible, and if that means therapy then I want him to have therapy. I just had always thought that Daniel and I would be able to give our children the best care without "prefessionals" intervening. One more thing lost.

The other worst part of our care conference yesterday was Dr. Kita confronting us on the things we had apprently been doing wrong. A little slap on the hand for breaking rules that no one had told us about. That was incredibly frustrating and I don't want to write much more about it. Today Dr. Guerra (aka Dr. Russia from previous posts) apologized to Daniel for the manner in which we were confronted about these things. So that at least makes me feel better. Dr. Guerra is wonderful. We really really like him.

Obviously I am very frustrated today. Most of the doctors have been wonderful, and we have had a great experience so far with the exception of just a couple of nurses. But Dr. Kita is making things a lot more uncomfortable for us. We don't feel very comfortable in the NICU anymore. But anyway I need to go pump so no more writing for now.


Nathan and Aimee said...

Maybe the doctor is a "special needs" doctor. You should use small words around her as to not make her feel inferior. You have obviously upset her superiority complex by having an opinion and taking charge of your child’s medical decisions. If possible you should request a new doctor. It may just be me, but I wouldn’t want a doctor with a negative outlook on the patient and disrespect for the parents wishes. On a happier note Ezekiel looks like he is doing great and I hope he gets home soon without oxygen (sticking his tongue out at the special needs doctor on the way out the door):)

Nathan and Aimee said...

OK... I got caught up in your outrage. Dr. Know-It-All probably hasn’t spent 20 minutes with the kid and she is mapping out the next 5 years. Let’s try this approach. Keep me up to date on all the curses she is throwing out and I will speak 10 blessings for Ezekiel for ever curse.

Kristin said...

THANKS AIMEE!!! :) :) :) That's just what he needs :) :) :)

J. Pike said...

And if you can't get a new Doctor and Josh and I come down to visit next week, then I'll slap her in the face for you! hehe.

This doctor obviously doesn't know the power of prayer that you guys have going on here. Ezie has already proved to excel and grow stronger and be healthier than expected. You are an incredible mom, and wife and will make it possible for him to beat the odds and hopefully not have to go through all that crap this doctor is talking about. I am hoping for the absolute best for you and Ezie. He is special, for sure, we knew that a long time ago.
Love you,

Nathan and Aimee said...

Hey Kristin! I just got home. Nathan is the one who has been commenting, but I totally agree! We will bless him so much the doctor won't know what happened! I love you and I'm praying right now. Aimee

Anonymous said...

Hey there,
I'm so sorry you had such an insensitive doc. There has got to be a much better way to decide what info to give, when and how to give it. FWIW Our preemie was in a number of services for 2 years with weekly home visits by a nurse as well as a developmental specialist--and of course evaluations up the wazoo. HOWEVER, it sounds like the doc failed to communicate that those sorts of things are precautions. Being a teeny preemie like Ezie and our daughter automatically red flags them as being at risk, NOT having a future of problems. The home nurse keeps you out of the pediatrician's office to stay safe from sick kids' germs. The EI team makes sure development continues on track and jumps in immediately if there is the teeniest wondering or concern. It does NOT mean there are or will be problems, it just catches a stray domino and straightens it to help make sure everything happens as it should. That was our experience, at least. Yes there were some issues following our daughter's discharge, but EI was wonderful and helped immensely. So please don't be disheartened. I know at this stage of the game thoughts of home visits are terrifying, but they are good and far better than the wait-and-see-and-do-nothing approach. Keep on keeping on--you are doing a terrific job and this will get easier.
Goldie's SIL

Teresa said...

I have a very good friend who adopted a baby in Kaz that was a preemie. They were told that she would have all kinds of problems, and granted some children do. But she is doing GREAT now that she's been home in a loving environment with good nutrition and lots and lots of love and interaction and PRAYER! You should see her now! She's thriving and growing in every aspect! Ezekiel will do just as well!! We will cover him (and you two) in prayer and speak blessings over him. The negative things spoken over him have no power against God's power! If God is for you who can be against you? :-)

Just to look at things from a different perspective, maybe you can use this to read up even more on preemies and some of the things you COULD be facing. We read a ton on adoption and then once we found out Sophie's medical conditions, we read up on them too. It's been an amazing experience to praise Him in the storm. It's easy to praise Him in the calm and "good weather" of life, but it's entirely different when you're facing such huge challenges to continue praising Him. :-) It's drawn me even closer to Him!

Love to you all,

Anonymous said...

All the frustrations you are feeling right now are normal. From the looks of it you have been NICU parents for a long time and don't necessarily see the light at the end of the tunnel yet. There is nothing more "un-natural" than having your baby in the NICU. You have every right to be grieving the loss of a "normal" pregnancy/delivery etc. Now it is time for you to grieve that loss. Take the time you need to heal from that loss. After your 'conference' it may feel like that loss is getting rubbed in your face by having to ask to hold your baby, and being told you need to put your baby back to bed, and now needing to wear gloves to touch your baby! It is ok to want to kick and scream and be angry! My preemies both needed Early Intervention. I wasn't too excited about it. But we were able to catch their little problems before they became even bigger ones. The doctors gave us worst case scenarios all the time. Most of their worst case scenarios have not come true. Some of which we still have yet to see as they get into school. Along the way, after I worked through alot of my grief and anger, we have grown SO much. We have met some amazing doctors who I have come to respect (even though I got pretty sick of seeing them in the NICU). I have learned that I need to be my children's advocate, but that there is a time (yes, it's hard to admit as a Mom) that my children may need more than Mommy can do. Seeing the same preemie families at the RSV (synagis) clinics helped us network and gave me so much support. It was such a relief to be in a room full of parents that knew exactly what you have been through!!! Talk to those fellow preemie parents! We met some amazing Physical Therapists who came to our home through Easter Seals. By allowing them into our home, showing them our family's love, support and trust in God hopefully we made a difference in their lives too. Now, almost 5 years a NICU Graduate I can finally look back on our experience with a little less worry and more clarity. We may still have some bumps down the road, but we'll deal with those when they come. We try to remind ourselves that the NICU was a part of our life, not our whole life. You will make it. Someday you will look back and this and wonder how in the world you ever made it. In the mean time, follow the doctors orders, don't neglect your marriage...go on a date with your hubby! You've got a room full of the world's best babysitters so take advantage of that. And don't forget to take care of you! Spend the week going to bed early and rest up now because before you know it that munchkin will be home and you'll have lots of wonderfully sleepless nights on your hands.
Keep your chin up!

Luanne in Ohio said...

Hi Kristin, Daniel and Ezie -

It has to be incredibly hard to have this new doctor come in and change the rules, especially when she's had the least interaction with Ezie of anyone. I'm so, so sorry that you have to contend with this, on top of everything else in the last 10 weeks. I'm praying.

Keep growing, little guy. I love you (all of you!).

Love, Grandma in OHio

Kristin said...

Thanks guys for all your responses and your support!!