Completely Random

So much has been happening and my thoughts are so scattered that I feel I cannot do justice to whatever it is I might want to say. So much has already happened that I feel I have neglected my blog for so long and I'll never catch up; which leads to me putting off posting and then getting further behind. It's an endless cycle. It's gonna stop soon and I'll just post whatever I feel like, but I feel like I should say something in case you've been wondering "where in the world did she go?" I'm still here and I'm determined to just start in and then post about our summer/fall randomly. Just thought I'd warn you....it's probably gonna be scattered! Which is OK, because it'll match my brain!

I do still plan to continue posting about our infertility struggles - I think I just need a tiny break for right now (will probably get back to it next week). I also want to start posting about our mission trip, which will definitely be a multi-part series with all I have to say! And, of course, I want to post about everything that's been happening in our lives at home.

I think that I am feeling so overwhelmed lately due to some major decisions we have made recently. The biggest one is that Nathanial and Ethan are both going to be evaluated for autism in Dubuque at their Autism Center on November 2. I will post soon on all that I've been feeling.

I'm still here, still thinking about this daily, still realizing I need to post more often (this is my only "journal" for these times in our life, so it's important to me to keep up for myself!), still trying!!

Hearing Tests

Nathanial, Ethan, and Noah went in for another follow up hearing test this morning. Last time, Noah really didn't do well, Ethan did not pass and Nathanial heard enough tones to receive a "pass" but missed a few tones. Since then, Noah and Ethan have had a new set of tubes put in and adenoids taken out (which Nathanial had done two months prior to the last hearing test); so we wanted to see if that would improve things a bit.

Noah did fabulous! He got to take the "big boy" hearing test, which involved wearing headphones, listening for tones, and placing a block in the basket when he heard the tone. He heard all tones today and both tubes were in place and open. He passed, but the audiologist also wants to be cautious, so he is to go in again in three months for another follow up - to be sure his hearing stays good and make sure if the tubes fall out, we catch it quickly enough that we are not messing with his speech too much. I haven't noticed a huge improvement in his speech since the new tubes were placed. He did then and still does, talk A LOT, but he is very hard to understand and that hasn't changed much. At least we know he is hearing, so we can still work harder on speech therapy. It appears that he learned to say things incorrectly and is now having a hard time breaking the habit.

Ethan was next and we tried the "big boy" hearing test, but that didn't work with him. We couldn't tell if he was overly anxious about when to put the block in or not, so we went back to the other way. He also didn't do well with that. So, we have a few options here. Either he has a permanent hearing loss in his high frequency range (which is what we thought last time about all three) or he has "mixed hearing loss" which is permanent hearing loss due to many ear infections/fluid being present constantly (entirely a possibility) or he was tired/stubborn/anxious and just didn't want to cooperate any longer by the time we got to those tones. His tubes were in place and clear, so fluid is not contributing to the problem at this time. When we return for his three month check, we are going to start with the tones he missed today (and last time) to see if that makes a difference. Then maybe we will have more answer....but as I am learning, this is on a constant curve, so we may not know for a long time! The good news is, he did hear in a speech range, so whatever kind of loss he's experiencing today is not affecting his speech ability or learning.

Nathanial went last because he didn't get new tubes in and his tubes were still in place and clear. He did very well with the "big boy" test, but still missed a couple of tones. His was also in the high frequency range. The plan is to continue to watch that and monitor it along with Noah and Ethan.

All three boys were very cooperative and well behaved. They waited well with Daddy and were excellent back in the booth with me. They are getting to be such big boys and I am so happy that they are getting a smidge easier to take out. It also helps when we do things in the morning...by afternoon, they tend to fall apart a little easier!

Part of the hearing evaluation was being done today in preparation for their IEP's, which are being written on Friday. We learned yesterday that the gentleman we had a LOT of issues with with Austin and trying to get him an IEP will be at the meeting on Friday. I need a lot of prayer to hold it together and know that this is a whole different situation and trust that he is not just on a rampage to destroy our family's education (which, OK, so it sounds a little far-fetched, but trust me, this man did NOT like Steve or I at all by the time we were done with Austin's meeting and the feeling was pretty mutual). He was not very educated in IDEA laws at that time and not at all compassionate. I'm hoping he trusts this time what our therapists have to say and that this is a smoother process since all three boys already have an IFSP. Again, prayer would be greatly appreciated!!!

The LORD gives his people strength. The LORD blesses them with peace.
~Psalm 29:11

Hannah's Update - We're Home!

Hannah is home! I thought I would recap our events of the last few days.

On Wednesday morning, Hannah and I got up bright and early and headed for Iowa City. Daddy followed a few hours later after he got Austin and Aidan off to school and the triplets to a wonderful friend of ours who volunteered to take them (on top of her own TWO two year olds!!).
We arrived and they were waiting for us. She got into her room and we met with her doctor shortly after admission. Hannah was not happy for the first little while as we waited for all the admission stuff to get done because she was feeling very cooped up. I didn't want her crawling around on the floor, so she was trapped between being held and staying in the crib - which did not make her happy. After everything was done, about two hours later, we got a tour of the unit and then Hannah was able to go to the playroom. She stayed in there a bit (she loved having free reign over the toys and not having to fight anyone off!) and then we took a few toys back to her room to play with. Then she was happier!

Wednesday was a very l-o-n-g day of a whole lot of nothing. Hannah's social worker (who was the person who was setting up home health care and equipment) came in for a few minutes to tell us she did not have time to meet with us that day, but would come on Thursday to chat. I was a little frustrated because I wanted to be sure that she would get it all set up. The dietitian came in and spoke with us for a long time in the afternoon. She was awesome and very helpful. She did finally give us an estimate of how long the feeding tube will have to be in place - at a minimum of 3-6 months and quite possibly longer. At least I have that in my head now and I know what is going on. Then we discussed how we wanted to do the feedings. We could either do three bolus feedings per night, which would involve getting up three times during the night or we could do a continuous feed all night long, which would involve continuous monitoring while in the hospital. After discussing it with the dietitian, we felt that the continuous feed would work better for our family as Hannah is finally sleeping through the night. That meant a room transfer for Hannah to a room equipped with monitoring. So after the dietitian left, our nurse came in and we moved to a different pod in the unit. Hannah enjoyed the ride in her crib through the halls!

Wednesday evening, we finally had some "action." They had decided to wait on all testing until Thursday (but did not tell us that) and decided not to place the NG tube until Wednesday night right before her feeding was to start (and, again, did not tell us that either!). I was terrified and they told me that I didn't have to stay in the room while they did it,but I knew that I was going to be learning how to do it the next day, so I insisted on staying in. Hannah did not have a nap all day Wednesday, got up terribly early for her, and then finally fell asleep about 8:45. They were supposed to place the tube at 7, but that did not happen. Instead, they woke her up at 9:15 to do it. I was frustrated at that point, but there was very little I could do. It took her a couple of hours to settle down after that, but then she was happy again and she finally went down for the night at 11:45.

Every hour and a half after that, a nurse came in to check her blood pressure. Also happening about every 15 minutes, the alarms on her would start going off because the rhythm of her breathing or pulse would change. Between the shrieking alarms and blood pressure checks, Hannah and I did not get hardly any sleep on Wednesday night.

Hannah was a happy camper in the morning, though! Dr. V said that she would rewrite orders so that her blood pressure would NOT be taken except once in the morning, so that she could get more sleep. Then, around 11:30 am, Hannah's resident came in and told us he had good news for us...Hannah had tolerated her feed well and we were being discharged! What?!?!! I had not been taught anything, we had not seen the social worker, no testing was done, and I had only seen the NG tube placed once, for the very first time, in a high stress situation. I was very angry and spoke with our nurse and it turned out that the resident went over Dr. V's head and was discharging without her approval. Hannah had a full day of tests scheduled, plus teaching for me was scheduled and we were to meet with the social worker. We were not going anywhere.

She had her blood drawn for a myriad of tests right before lunch time. They blew the vein the first time and got it on the second time, so she had minimal screaming.

Daddy arrived and helped her enjoy her lunch and then Grandpa Kenny and Aunt Sue arrived for a visit. Unfortunately, that was cut short due to more testing, but she did love seeing them while she was able to!


We finally went to do the sweat test for Cystic Fibrosis about 1:30 Thursday afternoon. Hannah had not slept in many, many hours and was very cranky and irritable. She did not want to be messed with, all she really wanted to do was to go to sleep and cuddle; so you can imagine how the testing went. It was not pleasant at all. It didn't work the first time on the legs, but it did on her arm. Because it didn't work, it took longer than expected and we ended up not being done for a few hours. But we did get fantastic news - she does NOT have Cystic Fibrosis!!!!!

I was taught how to place the tube on Thursday evening. The nurse talked me through it early on and that part wasn't too bad. Then we decided to do it about an hour after she ate, so her food had time to settle and she didn't vomit the tube back up (which can apparently happen or so we've been told). I was terrified, so sent out an SOS for my prayer warriors to pray and I prayed hard for a bit. Then it was time and it went so smoothly I was absolutely amazed. I could feel the presence of God and I know I wasn't the one to place that tube, but God used my hands to do it. I also felt totally at peace and it went amazingly well! I got it on the second try and altogether with both tries, it still only took about 3-4 minutes.

On Wednesday night, my cousins Madeline and Gina came to visit us and break up our evening a bit...that was awesome. On Thursday night, Gina was kind enough to bring me dinner. It was fabulous to not have to eat hospital food or even leave Hannah's room for the few minutes to go get it! (I had been making mad dashes for all of my meals because I really didn't want to leave my baby!)

Hannah was so over-tired by Thursday evening (even though she did end up getting about a 30 minute nap) that she was just hyper by the time I tried to get her down. She fell asleep about 8:30 or so, but then we had to hook up all her monitors and the feeding tube, which woke her back up around 9:15. She was then UP. She did not settle back down until 12:30 am, when she finally just collapsed in exhaustion. However, she did sleep all night long and did not wake up again until the resident loudly entered the room and woke her at 8 am.

Friday morning, we were VERY ready to get out of the hospital and go home. Hannah and I both missed our boys dearly and just wanted to get back into a "normal" routine. We had some bumps in the road trying to get out the door (the social worker never did come to talk to me the entire time I was there and never even connected with our home health people until the very last minute), but we finally left about 11:30 am.
{Hannah is so happy to go home, she's even telling her baby about it!}
We arrived home in time to see the tail end of the homecoming parade and I was able to pick up Austin and Aidan. They were both thrilled to see Hannah and I! Nathanial and Ethan were also thrilled when they got up from their naps, but I got a {very} chilly reception from Noah. I asked him for a kiss and a hug and he ignored me for a long time. Then finally he said "NO!" when I asked and I knew at least he was speaking to me again! He finally did forgive me for being gone and we are now back to normal!

Hannah has pulled her tube three times - twice on purpose and once by accident. The first time I waited for the home health nurse to come to re-place it since she was on her way anyway. That way, Steve could see what I needed him to do and I didn't have to walk him through it all, either. It went very well and I placed it quickly then also. Since then, Steve and I have become quite the little team and we're near-experts in placing it. Not that I ever wanted to be, but I am so thankful for God steadying my nerves and helping me to do something that could have been a very difficult thing to do! Hannah has been sleeping a bit better since returning home. The first night was a bit rougher and last night she was closer to her more routine bedtime. Things are settling and going well!

Hannah has already gained another pound and a half - just since the tube was placed!! They told us that kind of gain will probably not continue, but it is awesome to see an immediate pick-up in weight! She is very happy and looks better than she has in a while. She will go in for weekly weight checks at her doctor here and then go in monthly to Dr. V in Iowa City.

Thank you for all of the prayers...it helped immensely and we really appreciated it!!!

Development Testing Update

The boys went in for their testing on Friday. Ethan and Nathanial had seen the ENT on Tuesday and she recommended we wait for the hearing part of the testing until Ethan's ear was better. When I called, the AEA said that they would do the testing with the knowledge that he probably wouldn't pass in that ear and we can follow up on that ear later. With five out of six ears doing well, though, we really didn't want to put everything off.

The hearing part for all of them was fine. Nathanial and Ethan both missed a few tones. Ethan did flunk in his right ear, which we knew he would, but he did great in the "hearing range" test, so he's fine. The audiologist recommended waiting to re-test all of them (Ethan included) until they are old enough to do it with headphones - around age 3. I personally feel that they have had their hearing tested plenty and are fine, so we are not really concerned about that part. We just had to do it because they don't want to start any sort of speech help until they know they can hear at a learning level.

They met with the audiologist, two speech pathologists, one early childhood developmental specialist, and one child psychologist. It took about two and a half hours to get everyone tested and they did great. All three went into the room with Steve and I and all the "specialists" and then they just played. Daddy then took each one out individually to do the hearing testing. Mostly, they were observed while they were playing and we were asked a lot of questions.

As is usual, they were pretty silent. They played and laughed and threw things (which is quickly becoming "normal" - much to my dismay!) and acted like their normal little almost-two-year-old selves. They decided they want to evaluate them at least two more times - both at home - to see if they are any different at home than they were there (aka - more talkative).

At this stage, we know nothing. We don't know if they have a "true" delay - although after reading through the material they sent home, I'm more positive than I ever was that they do have a true delay. They will come here on Thursday and one more time yet to be determined to observe them again. Then they will all meet together and share what they felt each of their opinions was and come up with a plan of action. Then they will meet with Steve and I. So we are a long way to finding out if they even qualify for services, but I am honestly praying that they will. If nothing else, we need to stop the high level of "twin" (triplet, in their case) speak going on.

The one speech pathologist did say that even if they don't qualify for services now, that we are to keep a close eye on them because they may in six months to a year. She said it was good we are keeping close track of them.

If they do qualify for services, they will have one of two levels. They either will qualify for 60 or 120 minutes per month, which amounts to one-one hour session or two-one hour sessions per month. I am not sure if that is each of them or for all three together. I didn't think to ask about it when we were there, and I will ask on Thursday.

I also voiced my concerns about Nathanial, so they know that I am concerned about him being somewhere on the spectrum and that Steve isn't (they said that's common). And I told them I was concerned about everyone's level of frustration by lack of communication. Ethan and Noah are especially getting more and more honked off much easier because we do not understand each other. The child psychologist felt that pictures may help if their comprehension is there (it is, in my novice opinion), so that was one idea.

One interesting thing happened. I sign with them - constantly. They refuse to sign back and look at me like I am some insane woman put in their life just to irritate them when I expect it back. As in, I wait while getting them a drink and sign "More milk please." Then they look at me like I'm an idiot, then I get the drink and sign to them "Thank you." Again, the look. Yeah, right lady - just give me the drink. Well, Noah was playing with the speech pathologist and she suddenly asked if I signed with them and then asked if "please" was one we use. She then informed me Noah signed "please" to her - repeatedly. Interesting.... So they know what I want and they know how to do it and yet they refuse? Huh.... Welcome to the two's!!