Friday, September 26, 2008

August 6, 2008

So, Seth is hanging out, weight wise, at 5.90 kilos (fluctuating between 5.91 and 5.88 or so.. today he was down on our scale.. just something else for me to stress out about!). Oh, that's about 13 lbs. (I almost forgot to add that!!). I'll try and get a pic posted soon (but don't hold your breath). He's SO sweet, his face is getting really round, he's got those "fluffy" Bonnett cheeks.. And his eyes.. oh, his sweet BIG eyes.. I was so sure they were going to be brown.. I know they are not going to be blue but I"m starting to think maybe green.. We'll see..

June 17, 2008

I was trying to come up with a clever heading for this and I just can't so I'm being boring and just sending out an update. Blah.

My sister is here from California. She was originally supposed to come for a week in May to help out. She came this week because my dad's wife planned a big bbq bash for his 60th birthday and a Father's day thing and Kari couldn't make two trips.

On the only positive self care note I can come up with (but it's a biggie), my Ob's office called in a Zoloft Rx for me. I'll pick it up (or have L pick it up) tomorrow. I have a counselors appt on Thursday of next week. Honestly I'm a freaking mess. I can't get anything done.. for many reasons but as much lack of focus as anything.. I did manage to do a few loads of laundry today (well two) but it was mostly because my kids are COMPLETELY out of clothes.

Seth is doing as well as can be expected. I think I already mentioned here that the ped. card. is very pleased with his progress and his weight gain. WE did take him in for a chest xray yesterday, only to be told he was fine.. I was worried about his breathing (which is always a little heavier than usual but seemed even more so yesterday).. So we can chalk that one up to mommy being paranoid.. (not that anyone minded). I worry about him all the time and can't even bring myself to think about August with out falling apart.. (and as I mentioned above, falling apart isn't all that unusual anyway)..

Okay, this has turned into a long stupid rambling post but I'm signing off now before it gets any worse..

Monday, September 22, 2008

May 24, 2008

As many of you know, we're HOME!! We've been home a week.

My PC is dead and I"m still figuring out my laptop..

We're doing well, the big kids (including Kayleigh) all adore Seth.. She wants to hold him all the time. He's a Sweet baby, very mellow unless he needs a diaper change, usually.We saw the pediatrician and the cardiologist this week. Seth is, as of Friday, up to 8 lbs and 21 1/2 inches. (Hee hee, at 8 weeks of age, he's still smaller than his brothers at birth!)

We are SO grateful for all the prayers and support we've received. I won't send regular updates but as we have changes, etc I'll try and keep you posted. If you feel so led, please continue to pray on feeding issues, Seth is currently on a g-tube, and we haven't been working with a bottle since we got home as we've just been settling in, but we'll pick it up..

If you 'd like to check him out, we had his pics taken before we were discharged from the hospital and he's now on the website.

The link:

Thank you so much for the blessing you have been in our lives! We are grateful that if we had to go through this, we at least got to do it with God, and the support of all of you!

May 11, 2008

Seth continues to do about the same.. but NOW about the same is AMAZING!! Yay, God!! Seth is healing well from his g-tube surgery, the nurses are gradually increasing his feeds to make sure he's still tolerating well.. We're still "nippling" with sterile water (bottle feeding) and Seth is still working on figuring out what to do with stuff in his mouth. Today he took 9ml from me.. not enough to sustain him (about 1/3 of an ounce) but it's good progress.

AND.. he WILL be home SOON!! The "buzz" on the floor is "as soon as Tuesday" (someone said Monday and I almost hyper-ventilated! ). We're excited.. and a wee bit nervous.. Sure glad we know who's ultimately in control (and it's not us!)..

Thank you for praying so faithfully for us. We will definitely update when Seth is home (if not sooner ).

May 9, 2008

Yay, more answered prayers!!

Seth had his g-tube put in on Friday afternoon and came back to his room BREATHING ON HIS OWN!! Woo hoo! (The nurses said it was because we had the BEST anesthiesiologist, I figure that God did it!) He's doing awesome, he spent most of Friday late afternoon, early evening, sleeping in mom & dad's laps.

They weighed him right before I left on Friday night and he's down to 6lbs 3oz (that's for those of you who have been specifically asking). (On a side note: a friend of mine had a baby on Tuesday and while Jack is shorter than Seth, they probably weigh about the same!). Within the next couple of days we can start using the g-tube for food and I"m confident we'll get Seth "bulked up" in NO time!

Thank you for all your prayers, I haven't recieved a date yet but I"m hopeful Seth will be home soon!!

May 8, 2008 - pm

Seth is doing terrific. He's really starting to figure out the swallowing thing (took 8, 7 & 10 mls today over his three sessions, go baby!) but he tires out before he can satisfy his nutritional requirements..

He IS having a g-tube placed tomorrow at noon. This is a relatively simple surgery but will require general anesthesia and the ventilator (we're just a teeny bit nervous about the vent.. but then we rememeber we are not in control! Yay God.) Please pray that he'll do well respiratorilly after surgery.

Other than that, we're about status quo!

May 8, 2008 - am

Seth is doing SO well!! The only issue remaining is eating.. We're working on it with Speech & occupational therapists but Seth is only taking millileters at a time (the best he's done so far in one feeding, about a half hour, is 8 ml, he gets 60 mls through his Ng tube every 3 hours). The drs have decided that he probably needs a feeding tube "long term", we'll still working on eating by mouth but his main nutrition will be through the tube. Due to that, Seth is getting a g-tube. This is a feeding tube surgically implanted directly into his stomach (the surgeon described it as a "gas cap" in his belly ). To prepare for that Seth will have an upper GI Study today (Thursday) and most likely the G-tube surgery will be tomorrow..

The surgery will require general anesthesia and so Seth will be placed back on a ventilator but we expect that to be VERY short lived! I"ll send an update tonight when I know what time surgery is tomorrow.

Thank you for your continued prayers for our sweet baby! Oh yeah, moving forward with this g-tube means that Seth will be home SOON! We don't have a date yet but I'm thinking sometime next week!! Yay!! I'll keep you posted.

May 6, 2008

Seth is doing AWESOME!! We are SO grateful for how far God has brought us and for all of you praying for us during this time!

Seth is still in the same room in Peds ICU BUT he's no longer considered an ICU baby! He's only under "cardiac care" which means that the pediatric ICU doctors aren't following him anymore, only the cardiologists! His meds seem to be stable (and are oral so we can bring him home on those) and are controlling the arrhythmia's we had been seeing.

The BIG remaining issue is feeding. He's currently on an Ng tube (tube that runs into his nose, down his throat, into his stomach) he's gradually being transferred over to "bolus feeds" (all at once) instead of the continuous feed he had been on. The GOOD news about that is he has actually woken up cranky and acting hungry when it was time for the next feed! Yay!! Speech therapy and occupational therapy come in to his room and work with him on sucking & swallowing from a bottle. The cardiologist said we'd give it about a week to see if he's going to pick up swallowing or if he'll need to come home with a g-tube (feeding tube directly into his stomach). We are confident that God can take care of this as well! Please keep praying (specifically regarding swallowing).

The boys (Sean & Cary) got to go see Seth on Sunday (Bloomsday) and that was fun too!

Thank you!

April 30, 2008

On to Seth! Today was an AWESOME day! When I went up today, Seth was off CPAP and on a nasal cannula. When I went up this evening, Seth was BREATHING ON HIS OWN! God is SO good to us. It's such an amazing sight! His sweet little face just has one teeny tube taped to it into his nose (his Ng -feeding - tube). The heart arrythmias are completely under control with the meds he's on. We tried giving him a bottle (of water, he's getting his nutrition through the Ng tube and IV) tonight, that didn't go so well but it's a start!

We're just SO blessed and thrilled to see how well our baby boy is doing! Thank you SO much for lifting him up in your prayers!!

April 29, 2008

Super quick update:

One big change, as of Tues eve, Seth had both chest tubes pulled. Yay!! Other than that, he's more or less the same, still on CPAP for breathing and doing well...

April 27, 2008

I haven't sent out daily updates because the days looked more or less the same.. The drs tweak Seth's meds, fiddle w/feedings, etc.. However, when I got to the hospital on Saturday, Seth was EXTUBATED! (again). He was on CPAP but as of our last report was doing GREAT so Yay!!! God is good and this is just another step forward for Seth! (Oh, and we DID get to hear him crying a little so looks like no vocal cord issues).

Specific prayer requests: For Seth to continue to do well respiratorilly, for feeding to not have "issues".. it would be wonderful to bring Seth home actually nursing (and the drs are skeptical about that and more inclined to think we'll bring him home on a feeding tube)..

God continues to bless us in so many ways, thanks to those of you whom He is using!!


April 23, 2008

Well, about the time I decide that I"m going to skip a day or two in updates, something happens that I just HAVE to share!

Seth is about the same tonight, still on the ventilator, he now has two chest tubes (one on the right, one on the left) to drain fluid he tends to accumulate in his chest.. He's been placed on antibiotics as a precautionary measure in case he has an infection (every now and then one of his tests will come back funky and they "worry" about infection and then it resolves)..

BUT the REALLY good news, the FINAL genetic test came back. Remember they did "karotyping" and that was 46xy (normal). This was a FISH test which looked specifically at ONE chromosone for a possible genetic disorder and it was NEGATIVE!! As far as the drs can see at this point, Seth is "genetically normal".. (and we had assumed that because he looks so good but it's nice to have it confirmed!).. YAY, God!!!

Okay, on THAT happy note,I"m off to bed!! Tomorrow's another day!

April 22, 2008

I spent some time at the hospital this afternoon, Leland was there this morning.. I called up a bit ago because they were doing a chest xray (Yes, Seth DOES glow in the dark! ) when I left and I wanted to know the results.. Seth NOW has a chest tube on the left side, as well as the one on the right they put in yesterday..

He's still on the vent and they're keeping him comfortable on sedatives..

The GOOD news for today is the doctors now seem to think his left diaphragm is NOT paralyzed, just very weak. With the ventilator breathing "for" him, and inflating his lungs, THAT will move the diaphragm and begin to strengthen it..

He IS getting better, just at HIS own pace!

Thank you for your continued prayers!

April 21, 2008 (for real)

I messed up yesterday's date.. I was just a teeny bit tired..

First, I want to say how blessed we continue to be.. God has continued to show Himself in the details, in some seemingly "little" things (that really are BIG things) such as putting people in my path JUST when I need someone to talk to. He continues to encourage and bless us using some of you for that as well so thank you for your faithfulness and listening to His voice.

As you know from yesterday's update, Seth is back on the ventilator. He also had a chest tube re-inserted today as he had fluid building up in his chest cavity again.. Leland and I took turns up at the hospital today..

Other than that, no major changes, the previously mentioned heart arrhythmia tends to pop up every now & then but seems to be better controlled by meds. And in the big picture, Seth does seem to be doing as well as would be expected.

My mom left today. The "big kids" are all doing well. Leland and I are hanging in there. Thank you for your continued prayers!

Sunday, September 21, 2008

April 21, 2008

I didn't send a Sat. update because Sat. looked a lot like Friday, just a good day.. Both Leland and I spent time at the hospital hanging out w/Seth, holding him, loving on him.. We decided to take ALl the "big kids" up to the hospital Sunday after church so the boys could see Seth again and Kayleigh could "meet" him..

This am, as we headed out the door for church, we got a phone call from the dr in peds ICU that Seth had some difficulty breathing and had been put back on CPAP. We decided to take the kids up anyway after church and had a brief "family" visit. Seth didn't look great to me as he had his head held way back in a position the nurses said they see in patients who are "air hungry".. And apparently he wasn' t doing very well as this afternoon he was re-intubated. The "theory" (or at least how *I* understood it from the doctors) is that he was just tired.. His "respiratory muscles" probably grew tired from working so hard, half of his diaphragm isn't working (due to the paralysis of the left side). His oxygen saturations were good but he wasn't "blowing off" the co2 well enough and his blood gases were poor..

At this point, the drs are figuring out the best step for getting nutrition into him, either an Nd tube (a tube that goes in through his nose and past his stomach) or a G-tube (directly into his stomach). The cardiologist said a "bigger baby" wouldnt have as difficult a time dealing w/the diaphragm stuff (oh, when Seth was last weighed, on Sat eve, he was an even 7lbs). Also, the heart arrythmia is still somewhat problematic and they're trying various meds to control that (we're on medicine #3..)

So, today was one of those "step backward" days the drs warned us about in Seth's recovery..

AND, my mom is leaving tomorrow (sniffle, sob..).

We're hanging in there, we certainly appreciate the prayers for Seth's healing and for his doctors wisdom. Thank you!

April 18, 2008

Pictures are inserted (above) And attached.

The top picture is from yesterday, when Seth was off vent, before CPAP. The bottom picture is from today.

And yes, Today was An AWESOME, we're singing God's praises day! That is me HOLDING Seth for the first time in 16 days!!

He had a GREAT day. He's off the vent and CPAP, on a nasal cannula. They pulled one of the chest tubes because it had slipped out of position anyway.. (May end up re-inserting it tomorrow).. The IV line in his umbilical cord area came out today. The drs are holding feeds to make sure he's doing okay with his breathing (he's getting IV nutrition). And, he goes to town on his pacifier!

We're praising God for the good work being done over here. AS much as he loves his "binky", I"m praying that we'll be able to breastfeed as I don't think latching on will be a problem!

And that's it for today, it was a gREAT day!!

April 17, 2008

The top picture is from yesterday, when Seth was off vent, before CPAP. The bottom picture is from today.

And yes, Today was An AWESOME, we're singing God's praises day! That is me HOLDING Seth for the first time in 16 days!!

He had a GREAT day. He's off the vent and CPAP, on a nasal cannula. They pulled one of the chest tubes because it had slipped out of position anyway.. (May end up re-inserting it tomorrow).. The IV line in his umbilical cord area came out today. The drs are holding feeds to make sure he's doing okay with his breathing (he's getting IV nutrition). And, he goes to town on his pacifier!

We're praising God for the good work being done over here. AS much as he loves his "binky", I"m praying that we'll be able to breastfeed as I don't think latching on will be a problem!

And that's it for today, it was a gREAT day!!

April 16, 2008

I know I said I wasn't going to send out daily updates BUT today was too good of a day to NOT share & praise God!!

As of 10:00 this am, Seth is OFF the ventilator!! Yippee!!! We didn't get to hold him as he was still having some minor difficulties and they put him on a nasal c-pap machine (big head gear type thing.. on the vent we could really only see above his nose well, now we've got a good view of his lips! ). He was holding his own on that, making little squeaky baby noises.. :)

Also, today, they discontinued the valium, the heart arrythmia is well-controlled w/the medication, and for pain, etc. he's ONLY getting tylenol!!

God is so good, it really feels like we've come a long way in the last two weeks. Yay!!

So there we go!.. MAYBE I won't pester you with an update tomorrow (and maybe I will )

Thank you for your prayers!

April 14, 2008

Yay, and Praise God! Today was a GOOD day... Seth was calm & mellow today (I'd give the valium the credit but I think the dose they were giving him is small enough that he really WAS just mellow!)..

The previously mentioned heart arrythmia is under control with medication. The drs are back to trying to wean Seth off the ventilator. Keep praying for those little lungs, once he's off the vent. we can hold him again!!

So we're staying the course! Thank you for all the prayers and support.

April 12, 2008

Oops, almost missed another one

Saturday was another "backwards step" day. Friday the cardiologist mentioned that Seth has a bit of an arrythmia (rapid heart beat). They were just keeping an eye on it. On Saturday, the arrythmia had been occurring more over the last 24 hour period and so Seth is now on a medication to treat that (and as of the last report Sat. night, I'm not sure the medication was helping all that much :( )

Also, Seth was extubated at 9:15 Sat. am. Unfortunately, by the time I got to the hospital at 11am, he was being re-intubated. He had VERY labored breathing and really struggled off the ventilator. The drs don't think it's heart function but rather a lung issue. I"m fuzzy on understanding (as I was reacting emotionallay and probably only heard half of what the dr said) but it seems to be considered to be a "small airway obstruction" possibly his lungs are slightly under-developed, etc. I"m going to try and get more details today or tomorrow on that and if we need to just wait out or what..

In addition to all that, Seth is having some withdrawal symptoms from all the pain meds & sedatives he's been on after surgery.. They've changed some meds to try and help with that..

Thank you for prayers. We just keep trusting that God is doing a mighty work here and His name will be glorified through all this.

April 11, 2008

Oops, got tired & distracted and forgot to send this out last night!

Friday was more of the same. They're getting a teeny bit more aggressive weaning Seth off the ventilator and the pediatric intensivist (PICU dr) said he'd get him off it by Saturday.. We'll see.

Seth has several different IV lines, PIC line, etc. He had a chest line but Friday it developed a crack right at the hub and was leaking all over so that got pulled Friday afternoon. So that's ONE thing out!

They changed antibiotics as a test came back showing what MIGHT be signs of infection...

And I think that's all our news! So, we continue in baby steps (which is appropriate really, if you think about it ) and we're moving Forward so at least we're making progress!!

April 10, 2008

Happy Birthday baby Brother!

I would probably not send this out today except that so many people tell me how much they appreciate getting them, I"m a little afraid I"d be deluged w/complaints if I missed a day!

Today actually looked much like yesterday.. The cardiologist came in and said "welll, your son will NOT be pushed." And the surgeon said he was going to move at his own pace, which appears to be: "Slow, slower, slowest". ha ha. Actually, they are trying to wean Seth off the ventilator TONIGHT but when I spoke to his nurse a few minutes ago, it didn't sound like it was going off w/out a hitch. I can update on THAT tomorrow!

THey have cut back on some ofhis meds quite a bit, he does seem to be experiencing some withdrawal symptoms from the various sedatives & pain killers he was on post op. Please pray for that to resolve quickly.

All in all, not a ton of new stuff.. The drs say he is getting better and we just stay the course. thank you!

April 9, 2008

It's so weird to think about the fact that tomorrow (the 10th) was Seth's due date! He's been through so much already for just turning 2 weeks old, sweet guy.

Today was an okay day. Seth got transfusions. The increased blood volume helps w/oxygen, etc. He looks pinker today. Also, he was getting sedated again.. He was a "little rowdy" and trying to pull out stuff, he has a "neighbor" now (little girl in the room next door, separated by a curtain) and when she cries it visibly upsets him.. All in all though, not doing badly, they were attempting weaning him off the ventilator (again, still!) and we'll see tomorrow how that went!

Leland went back to work today and I know that's hard for him so as you feel led, please lift him up in prayer!

God continues to shower us with blessings, big & small so we know how well we're being taken care of by our Creator!

April 8, 2008

Today was a harder day. The drs. said that Seth's recovery would look like "2 steps forward, 1 step back" and today felt like a backward day (to Seth's parents at least!).

Seth is still on the ventilator. He's waking up more today (and looking around, holding our fingers, etc) which is all good but still needing the vent to keep his oxygen sats where they need to be. The drs had to take him off the breastmilk. IT's a complicated medical explanation but basically the fat in breastmilk is moved through the lymph system to where it needs to be in the body and Seth's lymph system is just "leaking it out" into his chest, etc. This is not an entirely unexpected complication, and should resolve w/a change to formula. In the meantime, he's back on TPN (iv nutrition).

Actually, written out like that, it really doesn't sound like today was so bad after all! (I think mommy just had a hard day, I was feeling slightly unraveled today...). How good is God that in typing out this update I get to go to bed feeling encouraged again! Yay!

Thank you for praying for us.

April 7, 2008

God is so good, Seth just keeps getting better & better.. Not necessarily as fast as the drs think he should be getting better but fast enough to keep mommy & daddy encouraged!

Today Seth has been weaned off the paralytic and his sedative. He was trying to wake up for bits of time when we were at the hospital and spent a good deal of the day holding on to my finger! (Which is a HUGE blessing as he hasn't really moved for almost a week!). He tried to open his eyes a few times.. He's still on the ventilator but is stable and receiving breastmilk through his Ng tube. There has been question of an infection but so far he seems to be healthy (all things considered! ). The preliminary genetic testing has come back normal, more detailed testing is being run and could take a couple of weeks (we expect that all to be normal as well).

Please keep praying for his healing, for the drs wisdom. The boys were back to school today after spring break, we continue to be blessed by my mom's presence and help with the kids. We are experiencing some "interfamily tensions" (for lack of a better phrase and not feeling the need to go into details!) and would appreciate prayers for peace and good communication within our family.

Thank you ALL so much, we do not take your presence and your prayers for granted and are VERY grateful for you in our lives!!

April 6, 2008 - sternal closure

Today Seth went back into surgery to get his chest closed! Yay!!.. It hasn't been a day without it's ups & downs (of course). They were unsuccessful getting a 2nd PICC line into him last night (so today he looks like a pincushion, poor baby!) and so in surgery they had to leave in one of the chest lines (for meds, etc). They are weaning him off a few of his meds (with some expected reaction but that's being worked through). He's also being taken off the paralytic, and I believe they'll slowly start reducing his sedative.. The next big step is to get him off the ventilator and breathing on his own and they're going to start giving him breastmilk through his ng tube (that's been an answered prayer, the pumping is going marvelously!).

All in all, he's doing just what the doctors expect..(maybe at a teeny bit slower pace..).

We appreciate the visits and the prayers

April 5, 2008

Seth continues to do well! Yay, praise God!! The last couple days the nurses and the cardiologist have found him downright "boring". We can think of worse situations to be in than that!!

And oh, the things you learn in these situations!! Yesterday, Seth had a brain ultrasound to make sure that there wasn't any damage from surgery (stroke, etc). That came back clean. Today, he had a stomach xray due to a little blood in his ng tube. That came back fine also. I"m SO glad that I don't know to worry about these things beforehand.. and that I DO know who's ultimately in control anyway!

AT any rate, it looks like as long as we continue on this path, they'll close Seth's chest tomorrow (brief stint in the OR for that, and it's a BIG step in his recovery!).. All in all, he's doing well, we're hanging in there, the other kids are doing pretty great w/grandma (my mom who's staying with us for awhile). Please keep praying for Seth's healing and for his doctors. Thank you SO much!!

I'll try and send an update tomorrow (Sunday) but I expect that after his chest is closed we may have some more fluctuating, etc..

Thank you all!!

April 3, 2008

Yesterday (Wed.) was a hard day, it took most of the DAY to get Seth stable, adjusting his iv meds, pumping him w/fluids to keep his blood pressure up, etc. It was hard for his parents to see all that going on! (Today it was pointed out to me that he kept TWO nurses busy all day yesterday, I'm glad i didn't realize that at the time!)

This morning, he had to be put back on oxygen, a chest xray was ordered to verify the problem was fluid on his lungs and not heart function. A chest tube was put in and 50ccs were drained immediately... THAT was a turning point for Seth and he's been pretty stable since. The cardiologist actually said we were boring today! Yay, Boring is good!!

At this point, it looks like they won't close his chest until sometime over the weekend possibly but it may be as late as Monday.

The pumping is going well and my breastmilk is being frozen for when Seth is ready for food.

Please keep praying for his healing and for the doctor's!

Wednesday, September 17, 2008

April 1, 2008 - Post -norwood

Same day of surgery..

L & I are at home. Nurse promised to call if anything changed.. Seth is pretty out of it. He's getting lots of fluids (increased volume in blood, etc) and will start to look pretty swollen over the next few days..

We'll call there to check on him I"m sure..

God was really with us today. L & I both said that the day didn't turn out to be as torturous as we expected... LOTS of visitors for us lately too..

April 1, 2008 - post - norwood

Seth is in his room and seemsto be doing well. (He was moved from Nicu to PICU as they deal w/more cardiac cases). Sedated. The next few days will be critical, the next 8 hours or so especially...

I think we'll hang out here for awhile and see how things are going.

April 1, 2008 - Norwood 2

It's almost 1pm and Seth is OFF BYPASS! They're bringing him backup to temp and watching for leaks, etc. The cardiologist came in,surgery has gone well, the next 24 hours will be critical. He said that Seth is "doing it on his own, w/the help of some medicine" and he'd expect in the next 24 hours he'll get worse before he gets better.. We'll get there!

THANK YOU for your prayers. Keep it up!I KNOW God is hearing us and I"m so grateful that we know who's in control!

April 1, 2008 - Norwood

During Norwood..

It's 10:22 am here. Seth's surgery started (incision wise)at 9am. At about 10ish they called and said he was on bypass. We're praying like crazy here and I"m glad i have the laptop for a distraction!

Tuesday, September 16, 2008

March 31, 2008

Oddly, coming home w/out Seth wasn't as HORRIBLE as I expected it to be. I"m REALLY struggling though w/the "transitions". Going from hospital to home and home to hospital.. Just DECIDING to leave can be an issue. Today wasn't so bad as we spent almost all day hanging out w/Seth but I still felt bad leaving since surgery is tomorrow and time after that will be different..

I have my meltdown moments but Leland is doing an awesome job having HIS when I"m NOT having mine and we hold each other up!!

I promised myself I'd be in bed by 10 and it's already 10:30.. We're leaving house at 5:30am to see Seth before surgery so I need to get going..

Good night!

March 31, 2008

Baby Seth update - Day 5

Some highlights:
Seth extubated HIMSELF on Saturday night. He was done w/the vent, thank you very much. The big positive of that being that I was able to hold him Saturday evening.

Seth's oxygen sats have been holding their own where the drs want them. Starting on Sunday, we've been able to hold him w/a nasal cannula (think oxygen tank, old person, little plastic things in their nose ).

With the nasal cannula, I've been able to NURSE Seth. We've been not hugely successful. He's latched on a bit and nursed like a champ briefly on Sunday evening but today (Monday), he didn't seem to know what to do when he got milk in his mouth.

The boys were able to get into the NICU briefly this am and meet Seth.

Current update:
At this point, genetic test results have not come in. Drs haven't addressed the issue but everyone else (nurses, visitors, etc) says Seth looks just fine and perfectly healthy and normal.

Surgery IS scheduled for tomorrow, Tues. April 1, starting at 8am. Leland and I spent as much time at the hospital today as we could and will be in at 6am to see Seth before surgery. Surgery should last about six hours. PLEASE, please pray for the drs, for a successful surgery and while we're at it, the biggest issue in recovery can be feeding issues so we could start praying on that too!

I will TRY to post an update tomorrow, or have one posted when he comes out of surgery..

March 28, 2008

I got to spend about 45 minutes w/Seth this morning. I can't hold him but I rubbed his little head (w/LOTS of dark hair) and his little toes. FINALLY got to "count" his 10 fingers & 10 toes..

He was placed on a ventilator during the night as he was having apnea.. Not unexpected w/the prostaglandin he's on for his heart condition. Honestly, it might be considered not as positive as the tent but it made him easier to get to, I couldn't touch his head when it was buried under that anti-oxygen tent. He looked good. The nurse said he was stable and resting comfortably.

He DID try and open his eyes a couple of times for me but also he's on a dopamine drip so he seems a wee bit out of it (ya think??).

March 27, 2008

Greetings to all on behalf of Kathryn and Leland and Baby Seth. As of5:00p.m. today, Seth is holding his own and has been declared by onedoctor to be a good candidate for the Norwood procedure which was theexpected treatment for his HLHS heart condition. The plan is for him to have the surgery on Tuesday if there is a consensus of threedoctors. The other two doctors will examine him on Friday.

All things considered, he is doing well and those who have seen him thinkshe looks just great. Both Kathryn and Leland have been able to hold him and Leland has been able to go in and out of the NICU to visitSeth as much as he wants.Seth's immediate future includes maintaining his health with i.v.s andsuch and some genetic testing to determine if there are any underlying defects. Doctors predict he will be in the NICU for at least a few weeks.

We can pray that all the doctors agree on the procedure andthat the surgery goes well.In the meantime, Kathryn and Leland seem very upbeat and relieved tohave this phase over.

March 27, 2008

Announcing the birth of Seth Douglas Bonnett at 2:43pm on 3-27-08! Heweighs 7lbs. 4 oz. and is 20.5" long. He is currently in the NICUgetting checked over. Mom and Dad are doing well!

March 27, 2008

My ob just came in and broke my water! I'm still "gushing" all over the place (ick,I hate that feeling) but haven't really had anycontractions since then (15 minutes ago)..

Oh,wait, I think here comes one now!

March 27, 2008

So we're here, we've been on pitocin since something like 8. They keep turning me up, I haven't been checked lately, was 3 when we got here.. I am having contractions but nothing to write home about. Not too regular or close together, a little uncomfortable but that's it.

I am apparently NOT havinga baby by lunchtime, darn it.It was SNOWING this am but quit and the sun is shining now, thank goodness.

March 25, 2008

Yes, THURSDAY!.. T minus less than 36 hours. If only I didn't feel like I have so much stuff to do still!! :)

My birth plan.. well, I want my epidural as soon as possible (since I didn't get the effect of one w/Kayleigh).. Other than that, I just REALLY want to hold our sweet boy before they take him upstairs.. not sure if that will happen or not. Seth will be in our hospital. He'll go up to NICU on 3rd floor (I'll be on 2).. Daddy will go w/him (I hope). IF he still has to have surgery, he'll be in PICU on 4th floor immediately after surgery and then back to NICU..

Please keep praying for our family as we were at the ped's office on Friday w/Kayleigh, fever & ear infection. Leland was back yesterday w/Cary, strep throat. Lovely. We DID tell the boys last night, we kind of left it at "Seth might need surgery if his heart is different. You might not be able to see him (currently no sibling visits in NICU and we have no viewing window) but we'll bring home pictures. It's okay to be sad & scared, we have GOOD drs. looking after mommy & Seth and God is looking after us. Please ask mommy & daddy any questions.".. They both got a little teary but seemed okay.

March 20, 2008

Week 37

Well, in spite of the fact that there was SNOW on the ground this am (all melted) AND it tried to snow as recently as 45 minutes ago, my calendar says today is SPRING and I"m going with THAT!

We had GOOD appts this week! Saw the ob yesterday and baby has dropped a bit. He could feel Seth's head when he did the exam, so we're in a GOOD place for induction next week. Externally, I measured 37 weeks. Ha, I AM 37 weeks! :) I thought that boded well for today's fluid check!

So this am we passed our non stress test AND fluid level came in at 16. SIXTEEN!!!! This is NORMAL!!!! (Below 24 is normal, we've been at 31/29 lately). The nurse came back in the room and said "He (the dr.) is VERY pleased with your fluid level today". DUH! God is SO good!! I"m VERY Excited to meet this little guy next week.

March 13, 2008

Week 36

Alright, it's raining and cloudy today.. but it could be snowing (and actually, I think we had snow in the forecast, eek!).. Spring is STILL coming (slower than I'd like but it's coming!)....

In spite of the weather, today was a GOOD day!! :)

Started the morning with a non stress test and a fluid check. Fluid is down to 29!! YIPPEE! (Reminder: above 24 is abnormal but we've run as high as 39 and have been at 31 lately). Passed the Non stress test.. The fluid check ultrasound gal ran an "incidental biophysical profile" (meaning it's not official but she saw him doing some of the things they look for so she scored it anyway) and Seth got 8 out of 8! Yippee again!

After that we headed over to the ob's office for an appointment there. And we SCHEDULED the induction!! So, yes, on March 27th, we're having a baby (we check into the hospital at 6am that day). Unless he comes sooner. I"m already dilated to 1 1/2cm and 75 % effaced (or we could just go on in that state for weeks).

And some dear sweet friends of mine blessed us by cleaning our house today! Yup, today was a GOOD day. I know God is watching over us, I"m feelng well cared for and loved.

Next week, more non stress tests, LAST fluid check on Thursday. I"ll keep you posted! In the meantime, we appreciate all the prayers for our family. Please lift our other kids up in your prayers as well, Sean particularly has had a hard week (nightmares, feeling "left out"). Thank you for loving us!

March 7, 2008

Week 35

Another good round of appointments! Yay!! The sun is shining and in spite of the MOUNDS of snow still on the ground (in places anyway), spring is coming!!!

I saw my ob's office on Wed. (Nurse practitioner - my ob is out this week). Still measuring 43 weeks externally. I figured that would bode well for the fluid level check the next day. She did put me on antibiotics since I've been coughing up junk and feeling ucky. I"m still waiting for those to kick in!

Thursday found us passing yet ANOTHER non stress test (which Seth actually performed for this week completing quite a round of gymnastics just as we were finishing up.. And we could hear that he had the hiccups when we started! Quite funny really). After that we had our LAST growth ultrasound. Seth is measuring 36 weeks and 2 days (I think she said that would put him in the 69th percentile or something. The u/s tech asked about weight guess and after hemming & hawing I chimed in for 6 lbs. The machine figured him to weigh 6 lbs 2 oz!! Another big B-- baby boy!! AND among ALL that good news, fluid level (I almost forgot to mention this!) was 31! Still higher than normal (that limit is 24) but stable (as it was 31 last week too!) so that was GREAT news!! The doctor even seemed happy with that (and I probably don't have to tell you how rarely this doctor seems happy! )

God is SO good, and we are SO blessed. I am so grateful for the prayers and support we've received from all of you! Thank you for walking this journey with us! (THIS part of it is almost over!).

February 29, 2008

Week 34

Yesterday was a GOOD day! Yay, God!! As you (who are local) know, the weather was BEAUTIFUL! Spring is coming!

We saw the pediatric cardiologist AND had an NST and fluid check yesterday. The fluid level has dropped back down again (YAY!) and was 31.45 (down from last week's 37, below 24 is "normal"). We passed the non stress test.

The pediatric cardiologist was as encouraging as they are given that Seth has HLHS. His pda (patent ductus arteriosis) is still open (good, good news! This is the duct that they'll keep open artificially after birth by using iv hormones so that he's stable for surgery). His aorta is "medium" sized. Large would be better, small would be worse. (Measured 2.85 scale is 1-5). One of my favorite parts was when the ped cardiologist (we were seeing a diff. dr. in the practice so first time w/this doc.) said "HE doesn't know anythings wrong with his heart". So far, that's all positive. Please keep praying. We have a growth ultrasound next week but won't see the cardiologist again until delivery.

February 22, 2008

General family update.. (Just so when the rest of the family starts reading the blog they don't feel entirely excluded!)

I've reached a stage where it's just hard to concentrate on much else than what's going on in OUR lives these days and besides my weekly updates, I hate to bore you guys with too many details.. But here goes anyway! LOL

Kayleigh is FINALLY starting to walk again! Yay!! She's still stiff legged but I can already see that's better today then yesterday. This am I'd say she's walking 75% of the time. That's pretty good from the little bit we were seeing on Sunday... She has an icky nose (cold). And she peed in the potty this am!! She wants to be potty trained SO badly and honestly *I"M* putting it off.. I just can't imagine doing it when we're having a baby in Four weeks (FOUR weeks, ACK!) but this am she was dry when I went to change her diaper and I asked her if she wanted to sit on the potty and she did!.. She's starting to talk a little more but she mostly says "uh, uh, uh" in a whiny voice that drives me crazy. She does also say "I want mommy" " I want daddy" "I wanna go... " "I wanna pee" (told you she wants to be potty trained).

The boys are the same more or less.. Doing well in school. Excited for the baby. We haven't really told them about any of the problems. We'll tell them a few days before we have Seth so that they know he won't be coming home from the hospital with us.

Leland is good, he's in out of town today getting fit for some new shoes. I took the day off work to stay home and play mommy. Had Bible study this am and then napped for two hours on the sofa. Geesh, no wonder my house is such a mess.. I just can't seem to find the energy to do ANYTHING..

February 22, 2008

Week 33

It's a lot harder to send out these updates when they arent overwhelmingly positive!

This has been a busy week. I saw my ob on Wed. Just for "fun" he measured me and I'm measuring 43 weeks.. Yeah, no wonder I feel huge! Also he ran a blood test called a hemoglobin A1cg (or something) that gives an "average" for blood sugars over the past few weeks or month.. This was done because the perinatologists keep questioning how well my blood sugars are being managed since that can be one of the causes of polyhydramnios (too much amniotic fluid). Dr. Richards said we wanted to see below 7, 6 would be ideal. We got a 5.4! Woo hoo! So THAT was awesome! (and again I was told "It's practically unheard of that we shouldn't have upped your insulin by now." YAY GOD!).

On Thursday, we had another Non stress test and fluid check. Quick recap, when this was originally brought to my attention as a problem we were at 39. Last week, 29. (Above 24 is abnormal). This week we're back at 37. They're going to continue checking it weekly.

I told someone this week that roller coasters are fun, for about 3 minutes. I'm getting a little weary!

Next week will be busy, we see the pediatric cardiologist and have more nsts..

February 14, 2008

Week 32

So we had our fluid check this morning. Just to re-cap, 24 and above is considered high (or "polyhydramnios" for you medical types), At our ultrasound five weeks ago, we were at 35. Last week it was 39 (39.7 I found out today). At 40-45, they want to drain it so you don't run into issues w/pre-term labor, etc. Today the fluid level was... (drum roll please)..


YAY!! The nurse made some comment about how it can go up & down. I don't care. I believe that our prayers helped and I PRAISE GOD that we can rejoice in good news today!.. Yippee!!

I will be having fluid checks weekly from now on and next Thursday I had to schedule for when Leland will be at work. Please keep praying for us and for Seth. Thank you.

Thursday, February 7, 2008

Week 31

So, we've started the twice weekly non stress tests (Last week). It's a pain to have to leave work on Mondays for this, and figure out child care for Thursdays but we're getting it done...

I saw my ob yesterday. Everything checked out fine there. He was quite impressed with my recent blood sugar levels. "It's practically unheard of that I should have not had to up your insulin levels by now" I shared that people are praying, and that includes for my blood sugars! :)

Today (Thursday), we had another growth ultrasound. And again, we can put this doctor's visit in the "It's always SOMETHING" category. The good news is baby looks good size wise. He's measuring 32 weeks, 5 days, and last ultrasound, he measured 1 week, 5days ahead so that's not accelerating. However, it was briefly mentioned last ultrasound that we had increased amniotic fluid. I didn't ask the number and they didn't tell me.. I found out today that at our last ultrasound, our AFI (amniotic fluid index) was 35. "Polyhydramnios" (too much amniotic fluid) is apparently anything over 24. Today we're at 38. The concern is that it will just continue to increase, if that happens and we get to 40-45, most likely the doctor will want to drain some of that fluid.. In the meantime, the extra fluid we do already have is putting pressure on baby and his left heart muscle is becoming "fibroelastic". I admit, I don't know what that means exactly but it didn't sound good.

Those were the only things that were specifically mentioned today. We'll have another ultrasound on Thursday next week to re-check fluid level.

In the meantime, I'd certainly appreciate prayers for baby Seth's healing, for the amniotic fluid level to stabilize, and for me to continue to be covered by God's peace (since it's pretty easy to get discouraged by all this..).

January 18, 2008

(In January, Kayleigh and Cary were wrestling and at the end of it, Kayleigh had a broken leg!)

So, never a dull moment at our house! Although, am I the only person who finds it ironic that we've gotten Sean to age 10 (almost) and Cary to 6 and our not-even-2 yrs old baby girl is the first one to get a broken bone???? How does THAT work?

So we saw the ped cardiologist yesterday (Thursday), no changes on Seth's condition. The left side of his heart is still very small, the ductus that they're watching is still open. She said that she just needs to see us once more before delivery.

We see our ob next week and the following week start those non stress tests 2x/week (Can I just say how much I"m looking forward to THAT? NOT!).

As of about 1pm this afternoon, Kayleigh is sporting a BRIGHT pink cast on her left leg.. pretty much toes to thigh. I told her that all the stylin' girls want one! She seems to be getting a little more comfortable with her leg.. Yesterday she was army crawling across the house but after the cast, her knee is now bent and that seems to have confused her ability to move a bit! I"m sure she'll figure it out in a day or two!

I DO want to say how grateful we are for the outpouring of love & support we've received over the last few days. We are overwhelmed by the kindness in meal offers, and even the emails that I receive have brought a smile to our face. We are so appreciative of the kindnesses offered by so many of you!

So, I'll sign off now with the reminder that if you don't hear anything for awhile, No news is most likely good news!


January 12, 2008

We saw the perinatologist on Thursday of this week. Had another ultrasound. Praise God! We had the FIRST encouraging appointment we've had in a long while!! Yay!!

You may recall that at our last u/s they informed us that one of Seth's kidneys was dilated and this can be a sign of genetic disorder (such as Downs which we're aware may be an issue) and/or can completely resolve by 32 weeks. At this last appt., we're at 27 weeks, and the kidneys look the same as they did four weeks ago. The GOOD news about that being that he is bigger and they don't appear bigger so I believe they now appear to be with in normal range. Mind you, the doctors won't call it "resolved" until 32 weeks.. something about this being a third trimester thing.. whatever, I told the doctor (whom we were just meeting) that we hadn't received very much good news and we would just take it and run with it, thank you very much!

In other areas: For gestational age, femur length measured RIGHT on at 27 weeks, this is good because it means we're not seeing any signs of slowed growth. As far as size, head and abdomen measured at 28 weeks, 5 days. That puts baby at something like 69th percentile (the u/s tech actually showed it to us on a "growth chart curve" like the one they use after the baby's born!). Well within normal limits and this could be due to the gestational diabetes or just plain old genetics (and most of you know, we have big healthy babies over here!)

We do have excess amniotic fluid. That was above normal but they're just watching it at this point and don't seem TOO concerned. Apparently this can be another sign of genetic disorder (I told Leland, it seems like they take every opportunity to remind us that we may have a baby w/Downs syndrome or some other genetic disorder). Baby's heart rate was good and everything else apparently looked good. So all in all, we left THAT appointment WAY more encouraged than we've been (from the doctor's anyway!) for awhile!

We see the pediatric cardiologist for a repeat echo this coming up Thursday and the last week in January, I start going in for twice weekly non stress tests. We are grateful to God for the grace he has provided every step so far and ask you to keep praying for us and our family! Thanks so much!

December 13, 2007

Truthfully, I should just be in bed by now.. I"m beat.

I took the kids out today, we got haircuts (the boys), saw Santa for our picture (smiling boys, screaming girl), shopped (the boys go to "Santa Express" where "elves" help 4-12 year olds pick gifts for family members) and had dinner. Got home about 8:30, put the boys and Kayleigh to bed, Grey's Anatomy is on but it's a repeat and in spite of the fact that I'm pretty sure I didn't see this one, I'm having a hard time caring tonight.. We saw the perinatologist today.. A different doctor in the group.. NOW the baby also has pyelectesis or something which basically means the rt. kidney is dilated. This CAN resolve by 32 weeks on it's own.. It can be an indicator of chromosomal abnormality like Downs.

Honestly, I'm tired. TIRED, tired. I want to stop hearing "bad" news at EVERY freaking appt. ::::::sigh::::::::: I"m sorry, I don't mean to come here and be such a downer but I just can't be positive tonight..

I"ll head to bed as soon as I do my insulin injection (gestational diabetes).. ::::sigh::::: I"m glad tomorrow's another day..

December 12, 2007

Well, we saw the pediatric cardiologist today. We can add ANOTHER doctor and four week appts. to our schedule.. this was NOT good news. That's actually an understatement. I was EXPECTING good news and instead I got, and I quote, "this is probably the most serious condition". Lucky us, huh? (Actually for lots of reasons, we ARE blessed).

Baby Seth has Hypoplastic Left Heart Syndrome. I don't really understand all of it but will add a couple of links to the bottom of this email. Basically, the left side of the heart is very underdeveloped and is not able to pump the blood (to the lungs I think) (later learned that the left side of the heart pumps the oxygenated blood back to the body). This is a non-issue in-utero as there is a duct in the heart that is usually open until 24-48 hours after birth. Once that duct closes you run into real problems. We will have follow ups every 4 weeks w/the ped. cardiologist because occasionally (rarely) that duct can close in utero and those babies require emergency surgery at birth.

In most cases, baby gets hormones at birth to keep that duct open and surgery is done (the Norwood sano operation, you'll see it in one of the links) at 3-5 days of life. A second surgery is done at 6 months and then often a third surgery at 30lbs. This is a rare condition. Sacred Heart has had 6 patients with this in the last two years and of those only one (who was very small and apparently had another syndrome) hasn't survived.

We are optimistic. Still praying for a miracle of course and grateful to be in a community that is so well-equipped medically.

Both of those links were provided to us by the doctor we saw this am. They pretty much cover the same info. We see the perinatologist tomorrow so we'll be able to see how baby Seth is growing. He WAS very active today which made the fetal echo a bit lengthy.. I see my ob a couple days after Christmas and we'll just keep going from here!!

November 18, 2007

Okay, our latest after seeing the perinatologist on Wednesday (and my ob on Friday) is: IT"S A BOY!! (ACK! 3 boys.)

He looked really good. He measured RIGHT on for dates, all the measurements they took averaged out to 18 weeks, 6 days, and I WAS 18 weeks, 6 days. So that was all good news. We might still be looking at Down Syndrome. We chose to NOT proceed with amnio (as that wouldn't make any difference in treatment plan at this point anyway) so we won't know one way or the other on that until birth. The increased nuchal transparency fold is still present, I believe it's grown but I think it's just grown w/baby and is not huge at this time. They didn't mention it except to say that it was still there. And he possibly/probably has a heart defect. It sounded like they had real concern but also, they were not thrilled with the view and he wouldn't roll over cooperatively (I said "typical B- baby, stubborn and uncooperative already! )We see the pediatric cardiologist on Dec. 12th for a fetal echocardiagram. And then follow up with the perinatologist again. Apparently we're going to get ultrasounds every 4 weeks. this will be the most photographed baby before he's even born!

All in all, we found the news to be VERY encouraging. We're still praying of course, and wouldn't mind at all if we get to the ped. cardiologist and they say "why are we looking at this perfect heart?" But we're confident that know matter what happens we can handle it with God's grace (and I'm SO grateful that we have a Lord in which we can put our hope! How do people get through stuff like this without God in their lives????).

Some history

In August of 2007, my husband and I found out we were expecting our fourth child. Surprise! At that time we had 2 boys, 9 & 5 and a girl, not yet two. We were shocked. Once we got over that shock we were thrilled. We believe babies are a blessing and we were excited to see what God would work in our lives... As usual, we had NO idea what was in store for us!

On October 2nd, we recieved the phone call I'll never forget. I was 12 weeks pregnant and had done some prenatal testing the week before, an ultrasound that measures the "nuchal transparency fold" at the back of the baby's neck. Our baby's measured abnormally. This, we were told, could be a sign of a number of chromsonal abnormalities. Through additional testing, what we eventually discovered was our baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). In layman's terms, our son would be born with "half a heart" as the left ventricle never fully developed. Currently, this condition requires 3 surgeries, around birth, 5-6 months of age, 2- 3 years of age (at 30 lbs of weigh).

Our son, whom we named Seth, has had the first two surgeries. I'm posting some emails that I wrote during that time to fill in some history...