Monday, March 28, 2011

3 Months Adjusted

Eliza is 3 months old adjusted (since her due date) and 8lbs 10oz as of her last weight check at the pediatrician a few days ago. It's a little strange to have so many different ages for Eliza (actual, adjusted, developmental). Just today a physical therapist* from our county Early Intervention program was calculating yet a different age. I find myself having to pause and think about it when someone asks how old she is. :)

So what is she up to?

-- Continuing to babble and smile. She is the most happy and smiley in the mornings. I cherish the mornings with her when she is happy and calm. As for the babbling, she uses it when she is content and when she is working herself into an over-stimulation melt down.. noticing the difference can be quite tricky.

-- Sat in the bumbo seat for the first time. She's definitely not sure about it yet. I'm fairly certain she's thinking "what is this weird contraption that's making me bend the opposite way I like to be." Thanks to all that time outside the womb, Eliza is pretty stiff and gets herself in a backward swan-dive position when left to her own devices. Practicing for the high dive I believe!

-- Found her mouth with her hands. She gives them a good lick but hasn't worked it out enough to prefer it to her paci.

-- Fighting naps with a vengeance. She is pretty much on hyper-alert when she is awake during the day and she only has short periods of calm. The hyper-alert times transition into full melt down in the blink of an eye.Thanks to some advice from the Doula we are watching the clock more to try to get her into a better sleep pattern during the day. I think it does help when it works but it means I spend most of the day trying to get her to sleep and when she finally does go to sleep, trying to keep her there.

-- And as of the last week - getting better at her feeding! No really! For the last few days the volume she has been able to take by bottle has increased quite a bit and she's even taken a few full bottles! Do you know how good this is?! Let me explain:

I gave E a good talking to last week after our Speech therapy follow up (Speech therapists, along with occupational therapists are the ones that help with feeding skills) at the Special Infant Care Clinic and she must have been listening. At our appointment last week they were concerned with how little progress she's made feeding-wise. Apparently most babies if they are going to be make progress with the NG tube then they will within the first month of having it. She's had it almost 8 weeks now and before this last week there was very little progress in how much she is taking by bottle and her state (attitude) while eating by bottle. She's usually quite unhappy while eating and trys to pull away by arching and squirming. Previously this behavior has been attributed to reflux and even though she does have reflux no one believes that is the main cause any longer. So their suggestion? A g-tube or gastrostomy tube which would replace her NG or nasal tube. A g-tube provides direct access to the stomach instead of going down the nasal passage and esophagus. It would mean major surgery. I was shocked! I was not expecting this to be suggested since during all previous complaints by us about how poorly she fed we were met with some version of "She's gaining weight fine and just give it some time, as she gains weight it will get better." The story had changed all of a sudden. Since she hasnt made quick progress she will probably need help (either NG or G) for many more months and there is concern with the NG tube affecting her development negatively. I definitely can agree with this. I hate having to put the tube down her nose every couple of days when she pulls it out and the frequency will increase as she gets older. We have to worry about inflammation and irritation all in the area that we want her to have positive feelings about. There is a lot more to this of course but in summary what we have gleaned is that-- the NG tube is the less invasive, better option for short term situations but when it looks like things are going to require long term intervention then putting in a G-tube works best developmentally  We don't want Eliza to have to go through another major surgery but we also want to do what is best for Eliza in the long run. The fact that she is making improvements this week is great! We are hoping that it continues and is enough improvement to not have to make the surgery decision. We have the first consultation with the surgeon this week to talk about things. We will see.

Oh look, feeding talk has hijacked my post.. thats a pretty good representation of our days as well. Ok I am done with this post.. I need to get to bed while Eliza is sleeping! More sometime later.

*The physical therapist was here to assess Eliza's development and see what if any therapy she currently needs. Fortunately she thought gross and minor motor skill-wise Eliza was doing OK and didn't need weekly therapy yet. Of course they agreed that she needs feeding therapy and hopefully will have someone out here soon for weekly sessions.

Thursday, March 24, 2011

Happy 30th Birthday Heather!

Today is Heather's 30th birthday. I've only known her for six of those thirty years but they've been the best six years of my life.

Heather isn't one of those people who insists on staying "29 years old" at this point. She recognizes her 30th birthday as a milestone in life but hasn't been obsessing about it or worrying about what it "means" to turn 30. It has probably helped that Eliza has kept us both busy enough lately that Heather hasn't had much time to think about it, but I think that Heather wouldn't be bothered by it even if she had all the time and energy in the world. She's sensible like that. I hope I'll be equally sensible when my 30th birthday approaches in ... oh my god, less than a year! Panic! (Just kidding...?)

Some people have goals for what they want to accomplish before they turn 30, or 35, or whatever. Two years ago, we agreed that we wanted to have a child before we turned 30. I'd say we accomplished that indeed, although certainly not in a way that either of us would have ever expected. That's life, isn't it? It makes me wonder what expectations we have now that will have been fulfilled (or not) in unexpected ways by our next milestone.

But enough of such musings... today we have a birthday to celebrate, a 30th birthday, a 30th birthday of a woman I love deeply.

Heather, this last year has shown so much more of your depth and strength of character and will. When you were pregnant and on bed rest, I was impressed with how steadfast and calm you were in handling the daily ups and downs and challenges. When our babies were born far too soon, I was amazed with your courage and dedication in learning the ways of the ICN so that you could be their best possible advocate and defender. When first Oliver and then Charlotte died, you grieved but remained strong for Eliza's sake. As Eliza stayed in the hospital for what seemed an eternity, you dedicated yourself to spending every day by her side and caring for her in every way you could. Now that she is home, and I see you working so hard every day to being the best mother you can be, I am continually humbled by your focus, your insight and understanding of our daughter, and your dedication to doing everything possible to help her to overcome the challenges she faces and excel at everything life has to offer her. You are truly an amazing woman and mother.

Happy birthday, Heather! I hope this birthday is your best one yet and marks the start of a wonderful new decade!



Thursday, March 17, 2011

Called in another Expert

So since Glenn went back to work and my mom had to head back home it's been a little nuts around here (hence the lack of posts, or responses to emails, or anything else productive really... whoops and sorry about that). I've decided that doing vigilance at the hospital is possibly easier than watching her by myself at home... just kidding...well, parts of it at least (and I'm definitely not asking to go back!!). I've been very overwhelmed caring for her by myself during the day. I just keep thinking "yeah she's a little complicated but she's only one baby, this should be no problem!" Talk about a blow to my confidence that my reality doesn't seem to agree with that thought.

Thankfully Glenn's parents gave us a gift certificate for some sessions with a postpartum doula agency when we were expecting the babies, so last week I called them to recruit some help. Today was our first session. We ended up with the owner of the company as our doula since Eliza is a little more tricky than the average peanut, at least when it comes to feeding. This doula has taken care of over 400 babies since she started the company -- wow!

So yeah, it was great to have a break today. She was here for the afternoon and worked hard today to get Eliza to take a nap or two. We think she's not getting enough sleep (because she's constantly overstimulated due to being a preemie?) and thats part of why shes so fussy during most of the day ... so all we need to do is stimulate her less (while also making sure she does her physical therapy stretches, tummy time and all those little things) get her to sleep more and we might be golden. ;-) That should be easy...

Auntie Hannah and Uncle Bizzy came to visit last weekend. They brought lots of food to bribe us into letting them hold Eliza. It worked (we forgot to tell them how inexpensive Eliza-holding is going for these days :-). Everyone wins. Except Pasha. She seems to think that everyone should be coming to visit her alone. Poor jealous puppy.

Tuesday, March 8, 2011

Six Months Old

Today we celebrated Eliza being six months old! It's quite the shocker to think we've had her around for 6 months now and to take a step back and see how far we've come in these months. She's quite the unique baby... six months old but only a little over two months adjusted (2 months since her due date), but acts less than even that since she is just 7.5 pounds. She is working hard at catching up and everyday we see little changes and big strides in her development.

Since coming home from the hospital she's been working on her babbling. It's the cutest thing to hear her "talking" to us or anyone that will listen. I remember the first few weeks in the hospital, when she was still intubated, wishing I could hear her cry. It was so hard to not hear anything from Eliza while the other babies in the room were able to easily make their presence known. Now not only do we get to hear her fussing but her happy sounds too!

She also is tracking us and objects with her eyes! We worried about this after her ROP issues and laser eye procedures but it seems that this is just one more worry to cross off the list. Who knows how far she will actually be able to see considering her parents are very nearsighted but thats a different story. :)

Last week we had our first follow up visit with the Special Infant Care Clinic (SICC) at the hospital. Babies that spend a significant amount of time in the NICU are followed by SICC after discharge to make sure they continue to develop appropriately, provide any therapy they may need to catch up and follow up on any ongoing medical issues. Of course most of our 3 hour appointment was spent talking about our baby girl's feeding skills. More changes to the plan and trial periods because of her continued frustration, disorganization when eating, and her very frequent fussiness. But all in all, the professionals believe that things are going very well since: a) she's continuing to gain weight -  7.5 pounds! newborn diapers already getting a little tight! b) she still WANTS to eat (AKA no oral aversion)  c) she hasn't been admitted back to the hospital. Apparently 50% of babies born before 26 weeks are back in the hospital within a month. It's been almost 3 weeks since we left the hospital (already!) and so far it's not looking like there would be any reason that Eliza would need to go back! (Yeah I know, knocking on wood.) I found it to be a funny marker of how Eliza was doing -- "Hooray! You aren't back in the hospital, you are doing great!" That's one way to look at it I agree. :)

This week we've met with our county coordinator for the Early Intervention Infant and Toddler program. She is automatically qualified for this program because of her birthweight and age. We are in the process of putting together a plan for early intervention and so that she will be able to get even more help in any areas she needs. Good stuff.

Happy 6 month birthday Eliza..we are so happy that you are finally home with us and we are looking forward to each new day with you!

Tuesday, March 1, 2011

Thank You

Lately I have been thinking about all the kindness that has been shown to us these last 6,7,8 months since we started this journey.

We are so grateful for all of the calls, texts, letters and cards, emails, blog comments, and voicemails. For the food, thoughtful gifts, flowers, visits to the hospital, lunches, hugs, and the occasional distracting conversation. Thank you to our family, immediate and distant, our friends, far and near, co-workers, neighbors, all of Eliza, Charlotte, and Oliver's caregivers that lent an open ear and kind word, and the strangers that reached out even so.

I hope and wish that all of you who have reached out to us during this time know that your kindness and thoughtfulness have helped carry us through some of the toughest moments of our lives and touched our hearts forever.