Sunday, April 20, 2008

We're Home!!

Sorry I haven't updated before now but things have really been busy. Leah was discharged from the hospital Friday! I smiled all the way home!! It is still unbelievable to me that we are on the other side of her surgery! She's doing really well but her sleep schedule is all mixed up. She barely got any sleep at all today and is overtired! In fact, she is sitting in my lap right now; wide awake at 12:30am!

As you can see in her new avatar picture (small picture in the top right corner) her swelling has come down a lot and she is feeling much better. That picture was taken today! I plan on adding the rest of her hospital details and adding more pictures to her slideshow when time permits. Please pray Leah starts sleeping better soon...I am exhausted!

Thursday, April 17, 2008

Leah's Surgery Slideshow

Day 3 Post op

adding this in for a more detailed account of our hospital stay:

Thursday April 17, 2008

Leah will be going home tomorrow!! She had a really good day today. Her eyes have opened up (her left one really wide). Dr. Stelnicki came by this afternoon and he said that when their eyes open it is a sign that everything is back to "normal" on the inside! Dr. Heger, our neurosurgeon likes to discharge from the picu....the spike in her low grade fever turned out to be a blessing in disguise....we have been able to stay in our private room and not have to move to the regular ward at all.

Her fever subsided last night and never came back today. She is now only on regular tylenol for pain "as needed" and hasn't needed it all day. We gave her a dose tonight when she was going to bed. Her appetite has really increased now that she is done with the narcotics. She nursed really well today. She had 3 bowel movements (which you know is a good sign after any surgery) and many wet diapers. She got the drainage catheter out of her head today and one of her IVs out. Now she just has a heplocked IV in her arm, the oxygen monitor on her toe, and the leads on her chest.

She seems back to herself today with regular active periods again, kicking her legs and trying to coo and "talk" to us, very active...as much as a 3 month old can be. And she is 3 months old today!! When she is awake awhile she gets fussy signaling she is tired. We are feeling SO blessed to have our sweet Leah back!! She has been through a lot this week but bounced back as quickly as they say babies do. It sure is a miracle of God!! I am just so relieved to be on the other side and now having the surgery behind us and our little girl here is just more incredible than words can express!! God is SO good!!

Yesterday both eyes were swelled shut and we were monitoring a low grade fever hoping it didn't spike back up and today she is well enough to go home with both eyes opening (and open tonight). Her neurosurgeon just wanted to keep her in the additional 24 hrs for monitoring to make sure she really was on the mend. They sure take great care of their children and even the parents here at the Joe DiMaggio Childrens Hospital!! Leah has received wonderful love and care!!

The girls have had such a great time with my mom this week!!! They did all kinds of special and fun things together and were totally "spoiled" while we were gone. Though they will be happy to see us I know they will be sad when their adventures with Grandma end this week. It was so nice that they received such great care and I didn't have to worry one bit about them. We sure did miss them though and it will be great to be home all together again tomorrow!! I know they also missed their baby sister.

Thanks again for all your love and prayers....Ken and I have had amazing strength and stamina this week and we know it is due to all the prayers said on our behalf. We are eternally grateful!!

Wednesday, April 16, 2008

Day 2 Post Op

I didn't have a chance to update the blog yesterday as things were very busy. I did manage to create a gmail account and email some of you. I also uploaded pictures to the laptop and resized them for email. I had intended to have everyone's email address with me but because I have not been able to log into bellsouth I haven't been able to retrieve them all. If you didn't get an email from us we will be able to once we get home which will either be today or tomorrow. The details that follow are what I sent in the email yesterday. I will then be posting updates today and hopefully pictures of Leah.

Leah developed a fever last night (Tuesday night) which I have been told is common with surgery and doesn't necessarily mean she has an infection. Nevertheless they are ruling it out. They took blood today and are doing a blood culture to check for infection. We'll find out that tomorrow. They took a urine sample. And they did a chest x-ray to see if her lungs were clear. Her neurosurgeon came by this morning to check on her. He told me she has a little bit of bruising on her brain but he did not seem concerned at all. He wants to keep her in picu as he likes to discharge his patients directly from picu so hopefully we will stay in here the duration. Because of her fever she may stay in here until Friday (originally we were told probably Thursday but as you know there are no guarantees with hospital stays).

Leah is keeping down food which is breastmilk or pedialyte for her. She has an appetite and I have been able to nurse her once yesterday and once today. Other feedings have been by bottle since that doesn't involve moving her out of the crib. I held her for 45 min today and will again later. Ken probably will too. The nurse just came in and Leah's temperature this afternoon now that the tylenol has worn off is "low-grade" so they will not be giving her any more pain meds until she starts to become inconsolable (if she does). Her last dosage of tylenol 3 was at 10:30am so she was due for another at 2:30pm...it is now almost 4pm and she is sleeping comfortably!!! So that is a praise!

She is on antibiotics every 6 hrs (strong ones) as a preventative. They anticipate taking out her drainage catheter (from her head) tomorrow morning.

Thanks again for all your prayers and support! I'd love to hear from you when you get a chance. I'll also be updating Leah's blog later and probably posting a few pictures there when time permits. Hope you enjoy the pictures...the swelling is completely normal but she sure looks pitiful!! Don't forget to add your comments to Leah's blog. She'll enjoy reading them in her scrapbook someday!!

Tuesday, April 15, 2008

Day 1 Post-Op

Thank you everyone for your love and prayers!! It has been SO nice reading your comments on Leah's blog. I have not been able to log into my email account like I normally can and I'm not sure what the issue is. So it has been a blessing and comfort to us to know you all are thinking and praying for us!

We had an amazing night last night!! Leah slept so peacefully even though the nurses were in here checking on her every hour. She is eating regularly (breastmilk from bottle) and keeping it down. She has been sleeping a lot today also. They heplocked her IVs (she has 2...one in her arm and one in her foot). Her catheter came out this morning so we are changing diapers again. We also did some incision care today. As each line comes out we are one step closer to going home.

Her surgeons came by this morning to check on her. Her vitals are good, her blood counts normal and the surgeons and nurses are VERY pleased with Leah's recovery so far. She is probably well enough to move out of picu, but our surgeon said as long as they don't need this room we will probably get to stay here again tonight. It would be nice if that were the case because I had a good nights sleep here last night...the first one in a long time. The nurse was quiet when she came in every hour and even did Leah's feeding while I slept. I didn't even hear her! So I had the first 5 hour stretch of sleep since before she was born. I am usually up with her about once a night. I hear it is best to get a good sleep the first night as tonight she may be much more awake.

We will be able to hold Leah today. Actually they were encouraging us to hold her yesterday but I really didn't want her jostled about. She knows we are here...hears our voices and feels our touch....but I know right now the best thing for her is to sleep and be comfortable. That way she won't feel as much pain.

Her surgeon ordered a cat scan to serve as a baseline. This will help for the months come as she is wearing her helmet. They will have a comparison. Her head already looks great...like a normal forehead but she IS swelling today. Her right eye more swollen than her left and may be almost closed. I have heard the swelling gets worse 2 days post op so it will be interesting to see her tonight and tomorrow. I will post pictures eventually but not sure if I will be able to get to that while we are still here. Leah will start to be more awake and active in these next few days.

Again...THANK YOU!!! We are so grateful to have such caring friends and family. Your prayers have been felt and we are experiencing abundant blessings from God as this week unfolds!

Monday, April 14, 2008

Leah's surgery update!!

Will post more details later but just wanted to thank everyone for your love, support and prayers......LEAH IS SUCCESSFULLY ON THE OTHER SIDE OF HER SURGERY as they say on my "Cranio" message board (online cranio support group) !!!!!!!!!!!!!!!

The surgery went really well. Leah lost 40 ccs of blood and did require a transfusion which is normal. She is doing really well tonight. They already removed her arterial line this evening and they will probably remove the drainage catheter tomorrow along with the catheter. She is in the picu (pediatric intensive care unit) which is again "common" for this surgery. Her pain is being managed with morphine and tylenol with codeine 3 which has kept her sleeping peacefully this evening. She had a bit of pain this afternoon while they figured out how much pain medication she needed.

She already kept down a 2 ounce bottle of pedialyte for a couple hrs which meant we then gave her breastmilk out of a bottle. She kept that down also!! That is great since the anesthesia and/or morphine can cause naseau and vomiting which she has had none of!

Her head is wrapped in a turban but we have already seen her 2 incisions and her forehead is flat now (no bulge or dent). The helmet will finish the reshaping.

We weren't able to get a cell phone or internet connection today during surgery so we are sorry we weren't able to update sooner. We are able to get both connections from the picu room!

Going to bed now as I have been up since 3am!! Leah and I did not get much sleep last night...she must have known something was up or maybe because we weren't at home in her regular bed. We are SO happy that Leah's surgery is behind her and we will try to update daily and eventually post pictures of Leah. We were blessed with a visit from our pastor today even though we are an hour from home. God sure has been good to us even down to the tiniest details of today! We praise Him and thank Him for Leah's successful surgery!!!

Saturday, April 12, 2008

Surgery Day Details

Yesterday and today I was on the phone with the hospital. Everything is a "go" for Leah's surgery. We have preauthorization from our insurance for her surgery. We are preregistered at the hospital. And today we heard from hospital billing and another call to give us our pre-op instructions. Billing was calling us to let us know how much we had left to pay of our deductible and that after that we are responsible for 20% (which we knew). We will be receiving a bill a couple weeks after the surgery and they said we could make payments.

Pre-op instructions are as follows: No breastmilk after 3:30am Monday morning. Leah can have water or pedialyte between 3:30-5:30 if we need to and nothing after 5:30am. We have to be at the hospital at 5:45am to check in. At this point we don't know if they will be doing bloodwork that morning before the surgery but there were no instructions from the surgeons for that. She said a lot of times with healthy babies they just draw that during "prep." I guess that makes better sense because by then they will be under and not feel the stick of the needles. I am thankful so far that she has not had to have any pre-op visits for labs/bloodwork.

We will be in a "holding" area with her. We will be able to stay with her until surgery time at 7:30am. Nurses will be available for questions and right before the surgery at 7:30 the surgeons and anesthesiologist will come in for any questions we may have. I am thankful Leah is the first surgery Monday morning....we won't have too long to wait with her being hungry...and we may be able to keep her asleep. She sleeps well that time of morning.

Our surgeons will be fresh off of a weekend and our plastic surgeon just came back from vacation. That is kind of nice.

So we'll drive down Sunday afternoon...get settled in the Conine Clubhouse....grab some dinner and try to get to bed EARLY!! I am not sure how much sleep we will get but Leah usually sleeps well between 9-1 or 2 so I should take advantage of that time frame though I am not normally able to go to sleep that early. I will wake to feed her her last feeding around 3pm and hopefully she will go back to sleep right away like she normally does (though she hasn't the past 2 nights!!). I am praying she will sleep well these next 3 nights so that I can get caught up on some sleep before next week.

We also found out today that though the PICU rooms are private that the regular pediatric rooms are NOT! They said sometimes if they are not busy they will keep the babies in the PICU for the rest of their stay. They put a request in for me for a private room since I am nursing but there are no guarantees. Pray that we are able to stay in a private room for the duration because this thing is stressful enough without worrying about Leah's crying keeping another family awake or them keeping us awake. We've always had private hospital rooms for all my births and when I've stayed in the hospital with Rebecca for a week when she was 2 months old. I really can't imagine how hard it would be caring for Leah and not having privacy...privacy to nurse, pump, sleep etc.

Tomorrow we have a lot of loose ends to tie up...cleaning, laundry, packing, paying bills, etc. I pray Leah takes better naps so we get it all done.

Remember to leave your comments for us....we LOVE hearing from you and will be printing these out for Leah's scrapbook! Or drop us an email. THANKS again for all your love and support.

Friday, April 11, 2008

Only a few more days.....

I can't believe Leah's surgery is right around the corner! I mean in 3 days we will be driving down to the hospital and in 4 days she'll be in surgery. This day is now much anticipated...not because we want Leah to go through this...but because it means the "wait" will be over. The quarantine will end for the girls the minute we leave on Sunday and they will be able to get back out into public, see friends and their normal lives. The worry of Leah getting sick and having surgery postponed and fretting about every little germ will be over! It also means Leah will be on the road to recovery and we won't have the strain of this surgery hanging over our heads anymore!

I have been told by other "cranio" moms that though handing her over to the surgeon was the hardest thing they'd ever done, that there is also a sense of relief....no more worrying, no more waiting. Relief that nothing happened to cancel or postpone the surgery. Knowing it is out of our hands now and turned over to skilled surgeons and ultimately God's hands! Though I dread the pain Leah will experience and the recovery process for her I will be relieved to see her get to the "other side" of this surgery!

The blessings I have experienced these past 2 weeks have been incredible! I am thankful for your prayers and support! I thought for sure the 2 weeks before surgery I would be a basket case. I was surprised to find that it has been the exact opposite! I can feel God's presence and the peace that can only come from Him....a peace that passes all understanding. He has given me comfort, strength and assurance that Leah will be fine! I am amazed that I am so calm and rational. It truly is a miracle.

Now I know it will be hard saying goodbye to my girls on Sunday since it will be 4 days before I see them again...the longest I've ever been apart from them. I also know that I will start to get nervous the night before and especially the morning of surgery. But thankfully I also know that God will be standing right there beside us and we will not be going through this alone. Most importantly God will be with Leah and He will be guiding the hands of the surgeons as He is the Ultimate Physician!!

Pre-surgical clearance!

I've been trying to get on here and post for the past couple days! Leah has had a great week taking regular naps. She has been quite the charmer and talking and cooing with us. She is also starting to take an interest in her toys, but the past 2 days she has required a lot more attention and her afternoon naps have been a lot shorter. Hence I have not been able to get this blog updated!

We went yesterday (Wednesday April 9) for Leah's pre-surgical clearance appt. with her pediatrician. Ironic that we have to take her into a pediatrician's office...where sick children visit daily....to get clearance that she is "healthy" enough for surgery! Especially after having her isolated from others, now I have to take her to a germ hot spot!!

I took many measures to help ensure she didn't pick anything up while we were there. I was blessed enough to have my mom watch my other 2 girls so that they weren't there touching everything and picking up germs. Leah was in her car seat practically the whole time and I was a fanatic about washing my hands while there. Her pediatrician was very careful and before we left I scrubbed up and washed Leah's hands since she likes to stick her WHOLE hand in her mouth these days! When we got home I was sure to change my clothes and I gave Leah a bath.

She is healthy and got her clearance for surgery!! Now just a few more days to get through and to keep her healthy. Thank you for all the prayers in this area! Leah weighed 12 lbs 8 oz and was 24 inches long.

Sunday, April 6, 2008

New Pictures of Leah

Leah is 9 and 10 weeks old in this photos. You can't tell in the pictures but her eyes are very blue. In one of them she is playing with the new toy she got in her Easter basket. Click picture to enlarge.

Leah is Loved!



I wanted to add some pictures of Leah with her family. Click on the picture to enlarge it.

Tuesday, April 1, 2008

In Quarantine!

As of yesterday we are now in quarantine!! Since we are only 12 days away from Leah's surgery we need to keep her healthy....they won't operate if she so much as has a runny nose! Since we homeschool it will be easy enough to keep the girls and Leah home. In addition to normal schooling we have some other fun activities to keep the girls from boredom....playing board games together, watching family movies, taking neighborhood walks, etc.

In won't be too hard for me since I am a bit of a homebody...though I do like to get out to our normal activities and we will miss those! But I will get more quality time with my girls and get a lot more done around the house...it will be nice to catch up on some odds and ends on the to-do list.

Leah is less fussy this past week and taking regular naps during the day which is so nice! I am able to get a lot more accomplished. For awhile there if we were home she wasn't napping well and wanted to be held a lot! She will be 11 weeks old on Thursday and I can't believe surgery is just around the corner. We are all ready to have it behind us! Thanks for the prayers and don't forget to add your comments here. We will be printing them out for Leah's scrapbook and I know she'll enjoy reading them someday!!