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WELCOME, GUEST |
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(1 member)
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niylnnrae @a…6 |
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12 MONTHS LATER - THE JOURNEY OF A 25 WEEKER
milkymomma |
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| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 | 31 |
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A PERSONAL RANT
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Mar 10, 2010 08:59am (EST)
I know that since I am posting this one so close to the next you probably will miss the one about Matty. But what the heck I need to vent. Feel free to skip on over to my previous post its all about Matty. This is not.
My marriage is just so....eugh.....not what i thought it would be?? Miserable?? Unhappy?? One sided???
I am fortunate enough to be a SAHM and I appreciate that, I believe its one of the reasons Matty is doing so well. But...I am a glorified secretary. And...he treats me like one. He even said one time, if you were my employee I would fire you. It hurt so much.
Now we are in the process of trying to buy a home (sometimes i even wonder why) and when i tell him that I don't trust/like our realtor (who said we should trust the sellers, even though they lied on their disclosure) and that the contractors are not trustworthy (one suggested we leave the dry rot in the windows bc its "not a big deal") he just completely ignores it and says I must be wrong and don't know what I am talking abt. He says I talk to much, I interrupt too much and I need to listen more. I have always been chatty, he's known me for 8 years. We even lived together so that there would be no "surprises".
To be honest, if it weren't for Matty I don't think I would still be with him. I dream of having a 2 bedroom place for him and I. A happy place, simple but just ours.
I have one friend out here (we just moved to the midwest 3 years ago) and she is VERY conservative Christian (nothing wrong with that and I am not being judgmental just describing her), and while I am Christian (more of a christmas/easter sorta gal)....she does the whole submissive wife thing which isn't my cup of tea. But frankly deferring to him is the only thing that works at keeping him happy. If I try to say something or do something he doesn't agree with I am being "confrontational" and trying to cause problems. I want my marriage to work, I want our relationship to be like it was. I used to love him...now I feel like I live with him.
I like the house but he loves it when I bring it up to her and all the problems I am running into with the contractors and the house her comment is that I must defer to my husband bc he is the head of the household. And that for the good of my family and our marriage I must submit and agree.
I remember reading or watching something where a character said the only way to have a happy marriage is for one party to say yes all the time. The more and more I try to listen to him the more I feel like I am just dying inside and saying goodbye to myself.
He is in such denial with everything with Matty. He hasn't even told them that he has any delays or any feeding issues. In fact he tells them he is normal. So they think that I am doing wrong and tell me whenever they get the chance (they are on the east coast so they don't see him/us frequently). And whenever they say something he ducks out of the room and doesn't stick up for me.
8 years ago he would leave me love notes, singing little dittys, make me dinner, foot rubs, tell me I was smart, funny and tell me he loved me all the time. What the h*ll happened??
Ok...I am just going to wrap this up. I am sorry if this is not what you expected to read. I know this is meant for a place to talk about our kids and their issues. But I just needed to get that off my chest.
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Posted by milkymomma | Comments: (3) | Permalink
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SHORT AND SWEET
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Mar 10, 2010 07:31am (EST)
Wow, have my posts gotten far apart and disjointed  I keep on thinking I will have more time to write but things always pop up, but I guess that's life right?
So in a quick followup. We met with the developmental pediatrician this week and she feels that there Matty doesn't have CP :0) Which is wonderful. However (isn't there always a however??) he has been assessed with the verbal skills of a 5 month old and the overall developmental age of 7 months with hints of 11 and 14 month problem solving skills. Oh course since he is 13 months adjusted we were hoping he would test closer to that age but really we weren't surprised.
The biggest concern is that he doesn't connect words or sounds with meaning. Aka...Dada can be said when looking at the cat, or my boobs, or a spoon....it has no real meaning beyond a sound. And while we are happy that now he does make B's, D's G's, M's and most recently W's with the scattered vowel we would love it if he knew to look at us when we said where is Mama or where is Dada. But we are hopeful that will happen in its own time.
So now we are going to get a new baer hearing test since 5 times he has failed the sound booth and 5 times everything looks structurally sound. Dr. K thinks if its not hearing it may be a processing disorder or overall severe delays. What kills us is that now 2 times we have had different doctors who haven't seen us in a while or met us say, "he had a grade 2 or 3 bleed right?" and he didn't. Never deprived by oxygen, not on the vent for a long time and no bleeds at all. We were really lucky. This is why we are so surprised with all of the tests.
Then yesterday we were at our regular doctor and I was just catching her up on all that had been going on and she commented, "so you are probably thinking he may have had a stroke then right??". Which totally caught me off guard. It was nothing we had ever thought of but now that we think of it, its something we can see bits and pieces that make sense. Weakness on the right side, he always drools on his right side when he bottles, his "suspicious positioning" was the right leg too, speech issues, memory issues....
DH doesn't think that's the case, even the doctor said if it were it would have been a long while ago and the only way to tell was an MRI and that it wasn't worth doing one until we exhausted the hearing and processing issues. Even I find it hard to believe but I can see why Dr.P brought it up.
Have any of you had a child who had a stroke? What symptoms did they have and how did you find out?
I know we are lucky and I am so thankful for how he is doing but I really HATE waiting and seeing. I often think about how great it would be to have a fast forward and a rewind button.
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Posted by milkymomma | Comments: (0) | Permalink
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SPEECH ISSUES...SUGGESTIONS NEEDED
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Jan 29, 2010 12:07am (EST)
Hello All! I knew I had been totally slacking but I didn't realize it had been since November!
I promise I will fill in...the good...and the not so good...
But I need your help and suggestions.
Matty just had part of his annual examinations given by his therapists and they told us that verbally he is about a 5 month old. He doesn't have words for objects/people (his own or "real" words) and he doesn't associate when we say a word with an object. He only makes D, G , B and some vowel sounds and even those are fairly limited.
Has anyone else had this? He had no bleeds (apart from minor cysts that cleared up by his second brain ultrasound in the NICU). He had about 4 hearing tests (baer (?) tests, sound booth, etc) and all shows that his ears/hearing were fine. Our therapist has suggested some new activities for us to do with him but I just worry something else might be going on. Any tips? Anyone else going through this?
I am so so so concerned. I just can't figure out why he might have this delay. We read, sing, use flashcards, chat, babble, take turns all the things they say we are supposed to do....
He says Dada but he doesn't associate it with my husband, heck hes called my boobs, the cats, his toys, the wall etc Dada. He doesn't associate any word/sound with any object/person. He still doesn't point at things. Blow kisses. Wave bye bye.
It wasn't a long list of things that Cheryl (the speech therapist) rambled off....and it wasn't a surprise, DH and I saw all these things...but it just felt like I was getting punched in the gut each time. I know things could be worse but I just feel confused. I am a cause and effect kind of person.
ie
spits food out = tongue thrust issues
I just want to know what is behind all this.
Any suggestions, tips, similar stories are totally welcome.
I hope all of you are well.
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Posted by milkymomma | Comments: (2) | Permalink
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BACK AND FORTH
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Nov 03, 2009 03:34am (EST)
I have been going back and forth about posting this....
You may have noticed that in my previous entry I wrote "So good news....", and maybe you thought that there should be a second part to it. Well, originally there was a second part to it that I took down and decided to focus on the good news about my little Cracker Monster.
I got too choked up posting it because I am scared about that it may mean, and being a superstitious person I worry if I type it will that mean it is what I think it is? But I decided to post it now to see if anyone had any similar experiences or suggestions. Have any of you had this?
Forgive the choppiness of this post I am just pasting what I had saved from the original entry.
...
Here is what is scaring me......
I don't even want to type this because I am afraid it will go from suspicious looks by the therapist to being reality but well...here it is.
Normally whenever the therapist comes Matty is dressed but today he had a HUGE blowout and I had just finished bathing him so he was just in his diaper. I was going to put his outfit on but then I figured since he was just going to be getting filthy because the purpose of therapy today was eating I would wait to dress him instead of dirtying up another outfit.
So Cheryl his speech therapist (SP) noticed when he stood supported (he can't stand on his own or pull up yet) his right ankle rolled outward almost immediately or after a few seconds of putting weight on it. And if he stood supported for a little while he would just pick up that one leg like a flamingo almost. He even rolled his whole right leg out a little.
Now, I know she is a speech therapist and PT/OT isn't her thing but she has worked with preemies/disabled kids as a part of a team for over 15 years. The other person there was a dietitian and she pointed it out too..again not a PT/OT but similar career background. When I asked what she thought it could mean she said well I am not sure I do speech but I want to have Laura (OT) come by and make sure she brings a PT with her to evaluate him. And then she mentioned something about a brace...
I know its not her field or what she evaluates but....I am scared. I have been scared waiting for the other shoe to drop since he has been doing so well....and I am worried this is it. I tried to act normal like it was no big deal. And I keep on telling myself she is just a SP...she is just a SP...she is just a SP...she is just a SP... but I can't stop looking at him when he stands. I feel like its the elephant in the room that I just noticed. For those of you that know of my favorite preemie poem (Welcome to Holland by Emily Kingsley) I really really do not want to go to this part of Holland.
But I am going to be an ostrich and stick my head in the sand until next week when Laura the OT comes and comfort myself that the developmental doctor saw him in July and said he looked great and she didn't see any signs of CP and that none of his therapists have ever noticed anything over the last 12 months. I am going to keep on thinking about him eating that cracker with huge crumby smile on his face.
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Posted by milkymomma | Comments: (6) | Permalink
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MY LITTLE CRACKER MONSTER
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Oct 29, 2009 07:09am (EST)
OK I had to add a couple pictures of my Cracker Monster
So good news....
Matty finally ate!!! It took 2 hours with our amazing speech therapist but he ate ...drum roll please.... a ritz cracker!!! Ok I was shocked that she would offer him a cracker since he is 8 months adjusted. We tried pudding, he used it as a drum and for teething; we tried a lolly pop, hated the taste; oat and rice cereal, not even in the mouth; pureed pumpkin, acorn squash, sweet potato's, yuck yuck yuck.
But as soon we he saw the cracker it was like watching the Cookie Monster on Sesame Street, crumbs were flying everywhere!! He devoured it like a wild animal!! It was amazing!
So the thought is now perhaps he just doesn't like sweets or gooey things. His dietitian suggested I started adding salt to his foods, which makes me nervous, to make them more savory. Looking back this sort of makes sense because when I was pregnant all I wanted was vegetables and savory foods.
It was just so great to see him go at the cracker, I loved seeing the crumbs fly everywhere and watching him chew then swallow. It just made me smile inside and out
S1052399
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Posted by milkymomma | Comments: (6) | Permalink
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I HAVE A 1 YEAR OLD!!
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Oct 19, 2009 06:06am (EST)
Wow, I didn't realize just how wonderful it would be to say, " I have a one year old!"!! Being honest, I only doubted that my son would come home on one occasion. So I don't know why I was so surprised that I love saying that but.....I HAVE A ONE YEAR OLD!!!!
On his birthday we went back to the NICU to bring 2 cakes, one for the day shift and one for the often forgotten but always important night shift. You know, I have been back at least 5 times since he came home and I never once got sad, or upset or nervous I have always been excited to go back and show him off, maybe to see a parent who currently has a 25 weeker and be able to show them that things can turn out OK. Life goes on and it isn't always as scary.
But this time I went with my husband who has not ever been back and we were reminiscing about the 3 months we were there and how scared we were the day I went into labor. I was in the hospital on bed rest so its not even like there was a frantic drive the day I went into labor so there was no deja vu or anything but I got teary on the ride over. Just remembering how I was so scared that I would die, or that my baby would be dead before I got out of recovery and I would never meet him, or that no matter how hard I tried not to push nothing made a difference and how I felt like a failure and a bad mother before I even had my child. How that jerk of an anesthesiologist told me that if I didn't stay still (keep in mind I was having contractions like 30 seconds apart) I wouldn't see my husband again. My husband remembered how pissed off he was that the anesthesiologist wouldn't let him come in even thought I was totally out (he is a doctor so being in an OR is nothing new).
My DH told me how terrified he was the whole time, something he never had told me. How he felt guilty bringing the baby back because he had promised him he would never come back. How he still was so scared even though he was optimistic and had faith that everything would be OK with our son in the future.
It actually made me feel so good hearing him say all this because for the last year he never once told me any of this. I have been feeling so alone because whenever I try to talk about it he just changes the topic or gives a one word answer and knowing that he felt the same way was just a wow moment for me. The only time he said anything about it was when my son had NEC, that scared the sh*t out of us. We both went home and cried that night and worried he wouldn't come home. But I will get into that another time.
So on the 13th (the birthday) we started a new tradition, dinner at Spangles. Now those of you who have been to Kansas are probably thinking...your tradition is eating at a chain hamburger place??? Why??? Well here is why, at 1AM after DH had been running back and forth between me and our son he was starving and the hospital cafeteria was closed and the only place open was Spangles. So he walked across the street in the rain only to find that it was closed inside and he had to walk...in the rain...through the drive through. And so we decided that it will be a little tradition of ours to do that. Go to the NICU, bring them cake and a card, tell the baby about his birth story and then have Spangles. It's not healthy (we try to eat all natural and organic) but its a tradition
Then we went home and had cake, it was 2 layers of vanilla cake and filled with cherry preserves with a cream cheese frosting. Yum!! The baby refused to eat it but he LOVED flinging the frosting on the floor. In fact if anyone has suggestions on how to get frosting out of carpeting I would love to hear them He then opened 2 presents and that began the month of birthday celebrations
Have I mentioned....:)I HAVE A ONE YEAR OLD!!!!!
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Posted by milkymomma | Comments: (4) | Permalink
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ICING ON THE CAKE
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Oct 10, 2009 02:23am (EST)
We are very very fortunate and blessed that so far despite a bumpy start Matty is doing incredibly well. But as he as gotten older there are tiny little things that I notice that give me a pause to wonder, hmmm....is that quite right?
On Tuesday I mentioned to his occupational therapist that I was having a h*ll of a time feeding him and that he had a killer tongue thrust so she set up having his speech therapist, Cheryl, come over. This wonderful lady is like the horse whisperer for kids with feeding issues. When I feed Matty he won't touch food or open his mouth....now when she does it he is covering his whole body with food and can't wait to have the spoon in his mouth. Which, of course makes me feel like I am completely inept and will never win any Mother Of The Year Prizes. But also very grateful to have her on his team.
So at the end of the appointment we went over my concerns:
-He doesn't keep food down or really let it enter his mouth.
-Reflux is rearing its ugly head again.
-Super tongue thrust (except of course when she feed him  ).
-Doesn't make D, B, or M noises...only makes variations of G.
-Doesn't blow kisses or wave.
-Though he knows my husband and I he doesn't turn for his name or ours. In other words no real recognition,
-Doesn't signal when he wants to be picked up.
I then mentioned to Cheryl that even though I don't own a baby milestone book (I just never saw the point in buying one since it would be pointless to expect a 25 weeker to hit an age appropriate milestone), I knew he was behind. And even though I knew I was right it still made my heart sink to my stomach when she agreed. He is turning One on the 13th so his adjusted age is just under 8 1/2 months and she said she guessed he was on some of these below a 5 or 6 month level. It just made me want to cry.
There were some positives, she thinks that he has good cognitive skills and that we will just have to work hard. But when I asked her if she thought it was indicative of anything she again made my heart sink when she said, "I don't know, what we need to focus on is doing as much as we can now and work very hard".
Have any of you experienced any of these? What did you do?? Any tips?? If your child is older, how are they doing now?
On the lighter side I have been giving English lessons to a Korean graduate student who lives near us and I have been bringing Matty to the lessons. He is a verrrrryyyyy social chatty little guy and loves to say "Ahhgee" which made Kim exclaim, "He speaks Korean!"
Apparently in Korean the word for "baby" sounds just like his, "Ahhgee", who would have thought that his first word would be in another language ?? So for all other parents who have a baby stuck in the Land of "G", your child is a linguistic genius! They know some Korean!! How many other parents can say that???
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Posted by milkymomma | Comments: (4) | Permalink
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SIGH....
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Oct 09, 2009 09:33pm (EST)
Well, today is the 9th and what can I say other than it's everything I expected. I kept on looking at the clock and at 9am I thought this is when I was being told I was, technically, "ready to go" at 80% effaced and 3cm dilated. At 10am I was being admitted and making phone calls to family. At 4pm we met with our son's future neonatologist who gave us a very informational and scary book saying that at 24 weeks we only had a 15% chance of taking him home and that there was an 80% chance that it we did he would have a major disability.
That night we talked about how the contractions had stopped, how I had stopped dilating, how the medicine was working. I was so grateful to get the first steroid shot to boost the surfactant and had starting counting the hours until my second.
In retrospect though it was such a scary night, it went so smoothly, I went to sleep (granted I was drugged up like crazy) slightly optimistic. We had been told I couldn't get pregnant, that I wouldn't get this far, surely our baby wouldn't be taken away or made to suffer. God wouldn't let us get so close to having our own healthy baby and take it away.
I am still surprised that I don't dread the 13th the way I dreaded the 9th. I guess it really is just because looking back it all went down hill that day, I just never realized it. I can't even think of the word to describe what was taken from me because I just don't know. It's not hope...because when he was born I clung to it....its not optimism....even though I have been mostly faking it for the last year. I just miss whatever it is because now it has been replaced by looking for problems, second guessing myself, fear of what every doctor will say at any appointment we will go to.
While I love everything that Matthew has achieved and I embrace and brag about every special milestone he has accomplished, I wish he just had the "normal" (eugghh I hate using that word!) ones. And I think that with every accomplishment he has even if he were to become a Nobel Laureate, the next Bill Gates, or President, I will think.....how did his being a preemie hold him back, could he have done/been more?
Sorry I'm not as entertaining as I tried to be in my first post.
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Posted by milkymomma | Comments: (0) | Permalink
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DENIAL ISN'T JUST THE NAME OF A RIVER
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Oct 04, 2009 09:16am (EST)
I have been putting off actually doing more than comment on NICU, Preemie and Micropreemie blogs for a while. And I decided that today is the day I should start. Partly for selfish reasons, because I think it will help me deal with what my son went through, and partly because I would like to think that maybe something I will write will help or give hope to another parent.
Before I kick this thing off I will preface it with I am open to any and all questions, comments, or suggestions. I am a 27 year old stay at home mom to one wonderful little boy. Matthew was born at 25 weeks and 2 days and spent nearly 3 months in the NICU and Special Care. My plan is to use this blog to chronicle his NICU stay, highlights from my pregnancy and of course how he is doing now. Thank you for taking the time to read about my experiences as a Micro-preemie Mom and my son Matthew's journey
In exactly 5 days from now it will be the 1 year anniversary of when things started to unravel, or at least go the way I had hoped and prayed they wouldn't.
On October 9th I went with my husband to go to the Perinatologists office for an ultrasound of our baby's heart to see if there were any congenital issues (I have some myself so he was at a higher risk). While I was getting the ultrasound I mentioned that sometimes it felt "like the baby was going to pop its hand out and wave hello" which being the first time I was pregnant I thought was normal...haha. Of course upon hearing that they did what I like to call "the fun ultrasound" (aka pelvic ultrasound). Then they whisked us back and when we asked the nurse what the results were she got a look on her face, asked how I was feeling, pursed her lips and said that the doctor will be back to talk to you.
Ahh that look… the look on that nurses face made us nervous. Let's face it any pregnant woman, especially high risk, always is looking for signs from the techs/nurses/doctors, a pause, a look or even a slip of the tongue that might indicate something is not as it should be. Because that is one of the greatest fears, in my opinion, that something isn't perfect with your child or with the pregnancy.
Now my husband at that point was a 4th year resident and I have been in hospitals enough to know from that look that something was up. He tried to reassure me that everything was fine and that there was nothing to worry about. I on the other hand thought that bed rest was in our future or maybe a cerclage but we both thought surely we would both be back at work within the hour. However, we didn’t get to go to work that afternoon because a few short minutes later Dr. O came in with her 4th year resident and said I was 3 cm dilated and 80% effaced and that I was immediately being admitted to the high risk delivery floor.
To say we were shocked was an understatement. I held it together well enough while they were there, but once they left DH and I together it hit me that all the scary things I had read, my worst nightmares, were coming true. I was a high risk pregnancy from the beginning due to my complex medical history (I will get into that in later posts). My OB had actually told us in the beginning that we would be lucky to get to 30 weeks, but I thought I might be the exception after all she had said she had had patients that carry to full term with issues similar to mine. But even with my resolve to prove her wrong I was a realist and after having two bleeds and three bouts of bed rest my prenatal reading consisted of preemie books & prenatal testing literature, and not the traditional, What to Expect When You're Expecting, books. So I had an idea what the numbers Dr. O told us meant, the mortality rate, the possible quality of life issues, not to mention the risks to my health.
When it all hit me I started crying I had just started to relax and get excited about the baby that Sunday because we had just hit the all important 24 weeks. And on October 9, 2008 I was only 24 weeks and 5 days and Dr. O had said that most likely I would deliver that day. In fact we had only told our family we were expecting 4 1/2 weeks earlier because we were to afraid to jinx anything.
So within 30 minutes, after a flurry of phone calls and admission paperwork, I was sitting pretty in my backless hospital gown with morphine in my arm trying to convince the nurses and doctors that I would be the exception. That I would be celebrating Halloween with them. That DH would be bringing a Turkey and a Christmas Tree in. That I was different. That I would be in that room for the long haul...and that I would not...could not be having this baby now because it was so immature and for pete's sake we didn't even have a crib! How could a person have a baby without even owning a single onesie??
But if you're on this site I am sure you may have read that with a smile (I know I wrote it with one  ) because not having a crib, onesie, diapers or bottles doesn't mean anything to Mother Nature.
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Posted by milkymomma | Comments: (5) | Permalink
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