Getting closer

8-31-2011

The first picture is from today with Rachel's NG tube gone. Yeah! She is now on ad lib feedings meaning however much she would like when she would like it. Her goal is 200ml in a 24 hour time period. I was told to bring a car seat with me tomorrow as she may discharge either tomorrow or Friday.

The second picture is of the bunny I knitted for Rachel. I started it early in my pregnancy but had strayed away from finishing until 2 wks before Rachel was born. I remember when I finished the bunny and was holding it- I thought Rachel was going to be bigger than the bunny when she was born but as you can see I was wrong. The bunny pattern is by Susan B Anderson in her Itty Bitty Toys book. She is a local (Madison WI) designer and has a great knitting blog. I love her patterns- she is by far my favorite knitting designer.

So close to coming home but yet . . .

8-29-2011

We are on a up and down roller coaster ride with Rachel's feedings. For the most part she is taking the majority of her feedings by mouth but not enough of them to come home yet. Her feedings were increased to 34 ml every 3 hours. We are getting close though and her nurse today stated they will be pulling out her NG tube tomorrow. She does better with her feedings if she is positioned on her side vs the traditional feeding position. The side position always her to control the amount she is receiving better and she does not seem as stressed out in this position. I will not complain though as this is the only real issue she has experienced since being born and it is an expected issue with preemies.

She was switched to Triple Paste for her red bottom and the Triple Paste is working better than the other creams they have tried. She is still emptying her bladder on her own.

She also continues not to mind wearing her Plavik brace (her German Tourist Outfit). I usually remove it while I am visiting to do skin checks on her, put a little lotion on and do some gentle ROM exercises on her feet before placing the brace back on. She appears to be ticklish on the backs of her upper legs- she will smile and raise up her shoulders and look like she is suppressing a giggle- too cute. Her physical therapist also works with her legs daily.

German Tourist Outfit

8-25-2011

The first image is after her bath this past Monday. I thought it would be a good beginning picture of her club feet before casting occurs. The second picture is of her harness for the hip dysplasia. The harness is to remain on for about 4 weeks- maybe longer depending on how well her hip sockets form during the 4 weeks.

Possible weekend discharge

8-24-2011

Rachel is up to taking 90% of her feedings by mouth. She needs to be at 100% for a couple of days and then we can talk about coming home. Her doctors felt it maybe this weekend and some of the nurses are guessing next week. Either way- it is good to have some light at the end of the NICU tunnel. She had another head ultrasound yesterday and again there was no increase in her ventricles (she is still measuring like a normal baby would). She had her special harness placed on Monday for the hip dysplasia. She slept through the placement and doesn't seem to mind wearing it all. I will try to post a picture of her in it soon for other parents who may need the same harness. I like to call it her "German tourist outfit" (sorry I have watched Duece Biggalo one too many times). Her bottom is looking less red and her stool is starting to be slightly more formed. All in all she is doing great for a preemie.

1 Week Old

8-19-2011

This week has gone by in a blur. We have been trying to balance home life with life in the NICU. Sometimes there are just not enough hours in the day to get it all done. Breanne and Alicia have been such good girls and helpers- we are very proud of them. They both have held Rachel twice and neither wants to give up holding her. It is fun to see how they all interact together -even at Rachel's young age you can tell she recognizes the girls' voices.

Rachel is doing great. The only thing holding her in the NICU is the need to feed more and gain more weight. She had gained back an ounce since she had the NG tube replaced. She likes to pull it out when the nurses are not looking- little stinker. She is doing everything appropriately for a preemie her age. She had another head ultrasound on Wednesday and everything has stayed the same- no increase in her ventricles. Her neurosurgeon is happy with her progress.

Her physical therapist showed Steve and I some gentle stretches we can do with her legs and feet. We are happy to report that she does have movement in her ankles and we saw her move one of her big toes. She loves to have the bottom of her feet stroked- it seems to calm and relax her. Orthopedics will be placing her in her harness brace on Monday for the hip dysplasia. We have see more leg movements with her as the week has gone on.

I gave her another bath today. She didn't like too much and let us all know. She did enjoy her hair washing again. I like when her hair dries and it sticks up all over the place. It took me almost a half hour to get her dressed after her bath. I think I am out of practice but that will change.

Please say prayers for the baby boy and his family across from us in the NICU. May God place his hand upon Cole and help heal his little body.

5 Days Old

8-16-2011

Rachel had her NG tube placed back in early this morning. She is able to coordinate her feeding skills but is still falling asleep shortly after she begins to feed. The nurses let her feed as much as she can and then the rest is given to her via her NG tube. They added a calorie supplement to the breast milk I am providing for her.

I was able to help give her a bath today. She did not like the bath but loved getting her hair washed. She rolled over twice on her own during the bath. I was able to dress her today too. She had her billirubin light turned off today- she will get rechecked in the morning and may possibly need it for another day. She will be fitted with a special harness/brace this week for the hip dysplasia and they may start casting her club feet next week.

Tomorrow Steve and I will be spending most of the day with her at the hospital. We are also taking an infant CPR class tomorrow. (too bad it wasn't my health care provider renewal- mine is due at the end of next month) The girls have been reading books to Rachel when we visit- it is fun to see her turn her head towards them like she is listening. She seems to respond a lot to Breanne's voice but Breanne did talk to her daily while I was pregnant.

Fireball

8-15-2011

Rachel has established herself as the next fireball of our family. She definitely lets the NICU staff know when she doesn't like something. She pulled out her NG tube this morning- they did not replace it. Instead they are allowing her to eat larger amounts at an extended time period. This method seems to be working so far- she will eat about 2/3 of the amount they would like, then she falls asleep and they work to stimulate her to wake up and eat more. She was upped to 20ml per feeding and eats every 3 hours. I am not sure if it is a compliment or not to have the nurses tell you- your baby girl belches like a trucker. (must take after her Papa) I was skeptical that a 3 pounder could belch loudly until she did when I was burping her- it was as loud as my 11 and 9 year old would be!!!!!

She was seen by OT, PT and the orthopedic doctor today. She did well on her evals from the therapies- she even scored some items above her gestational age and scored like a regular 40 week newborn. She will begin to have regular sessions with the therapies to strengthen her legs. The orthopedic doctor was very hopeful that she would be able to walk with AFOs. They may start casting her next week and are still thinking about the best method to help with her hip dysplasia. The neurosurgeon gave the okay for her to be on her back but she seems to prefer to be on her sides and will work to reposition herself off of her back.

Steve and I are attending an infant CPR class on Wednesday. It has been inspiring to meet some of the other parents in the NICU and learn about their babies. So many miracles happening! It was hard being discharged today and having Rachel stay. I know she is in great hands and I have nothing but compliments for the entire NICU team (and my mom/baby staff that took care of me).

On the other bright side- it appears that UMR has finally worked out a contract with Vanderbilt for the surgery.

Back closure from fetal surgery

8-15-2011

The images above show what Rachel's incision looks like right after birth. They were taken within 24 hours of delivery. Her fetal back closure surgery occured at 23 weeks of pregnancy.

NG Tube Placed

8-15-2011

While Rachel has been feeding on her own- she is not taking in enough calories and has been losing weight. After talking with her nurse, I requested that a NG tube be placed to supplement the extra calories she needs. Rachel's nurse spoke with her doctor and they were in agreement. She has been taking in 12 ml at each feeding and they would like her to be at 20ml. She gets tired out from working so hard to eat that she falls asleep during her feedings. The plan is to continue to let her feed and whatever the difference in ml is at that feeding will be given to her via the NG tube. I have worked with adults who have had one so it was interesting to see one meant for a preemie. Rachel's nurse placed the NG tube and then she had an x-ray to double check the placement. Everything looks good at this time with the NG tube. Rachel was quite angry during the placement (not that I blame her) but calmed down immediately after it was placed.

I may also request that she placed in an incubator instead of the open crib she currently has. It takes up a lot of energy and calories for preemies to maintain their temperature. She has been maintaining hers but if we can make it easier for her- we should.

I have been enjoying holding her at night but will not be able to do that any more as I am discharging today and our rules for visiting in the NICU change after mom is discharged. Rachel does have a great staff caring for her in the NICU- it is amazing to see and listen to all the care that goes into the babies there.

Unexpected delivery

8-14-2011

I woke up around 5:45 am on Thursday morning. I had noticed that I had passed a dime size blood clot and had passed two other spots of blood. I called my MFM doc and they recommended that I come in to be evaluated. As my husband and I were driving to the evaluation I had commented to him that we would be back home later today and that most likely the blood was from a broken blood vessel or something similar. Both of us agreed that would most likely be the way the day would go and we would need a good nap later in the day. When we arrived to be evaluated I was already assigned a labor and delivery room (must have been an omen). I was no longer having any bleeding and was confident of my departure to back home. Given our history of having the fetal surgery the doctor on duty wanted to keep me longer to rule out any of the possible risks of having the surgery done. I was given a pelvic exam which did confirm more bleeding and a pool of fluid- which turned out to be amniotic. I was also having some right sided pain but was unsure if this was related to the position of Rachel. To make a long story short- it turned out that my water had broke at some point but we are unsure of when due to my leaky bladder issues I had been having since the fetal surgery. The doctor suspected that I had a uterine infection starting- a.k.a. the right sided pain. Normally if your water broke they would try to give you steroids for 48 hours to help prep the baby's lungs and then deliver the baby- in our case it was determined that there was not time for the steroids and a c-section needed to be done soon. Interestingly- the OB doctor on duty had recently been to San Francisco to learn more about the fetal surgery for spina bifida and he was well educated on what could be happening and what needed to be done. (Turns out Children's Hospital is considering getting the education to possibly provide this surgery in the future). Also the previous day- our case was discussed with multiple doctors to prepare for our upcoming c-section in September. Talk about timing - especially with us receiving the NICU tour two days prior. Perhaps God had his plan for Rachel in motion.

There were 2 other moms scheduled to have c-sections then it would be our turn. My husband took this opportunity to drive home and let the dogs out and make arrangements for our girls (we had dropped them off at Grandma's for my evaluation). As Murphy's law goes- we did not bring our cell phone with and the phones in our room did not allow any long distance calls to be able to notify family. As Steve was gone thinking he had 4 hours until the c-section was to be done- the staff had come in my room and bumped up my c-section time- I had no way of getting a hold of him to tell him to get back to the hospital. Fortunately as they were getting ready to walk me to the OR suite- Steve walked back in and was given his "bunny" suit to put on. The moral of this story is - never be over confident- always take the cell phone with you and make sure you have your hospital bag packed weeks in advance. No need to ask if I had a hospital bag planned out and packed because I did not (now I am at Steve's mercy for whatever he brings for me to use- yep I will be sporting Betty Boop jammies tomorrow).

For the c-section I had received a spinal epidural and opted to have an injection of Duramorph instead of a PCA for pain control after the c-section was done. The Duramorph is suppose to last around 20 hours without making you feel groggy and does not increase the length of time it takes for the spinal to wear off. For me- the Duramorph worked wonders and I highly recommend it to other moms. For the c-section they were able to reuse the same incision that was used for the fetal surgery. The c-section was an interesting feeling to me- while you do not feel any pain- you can feel your abdomen moving around like it's jello swishing side to side in a bowl. You do feel a slight amount of pressure at times but again it is not painful. During my c-section it was noted that my bladder was slighly displaced and wedged tightly under my uterus- the cause of all of my leaky issues (made me feel better to hear the doctors noting the displacement as I had already began to mentally make an urology appointment for myself- happy to report I have had no more leaky issues since the c-section-TMI!) It took about 20 minutes from the beginning of the c-section until Rachel was born at 1:36 p.m. She came out crying- what a joyous sound! The NICU team immediately took her out of the room and began evaluating her- my husband was able to follow and one of the NICU doctors explained everything to him step by step as they were evaluating. I could hear her crying out in the hall while they continued to work on me. A few moments later Steve walked back into the OR holding Rachel in his arms- I got a brief 10 second peek at her before she was escorted to the NICU. It was hard to see her- I mainly got a peek at a little forehead. I opted to have my tubes tied during the c-section as we had decided several months ago that Rachel would be our last child not only because of our age (me 35 & Steve 38) but due to the possible risk factors in future pregnancies from having the fetal surgery done. From start to finish I was in the OR for about 2 hours- I was kept very comfortable and whenever I would feel any anxiety I was given something for it immediately. I do have to give a big shout out for the entire OR team that worked on me as they were all ladies! Rock on girls! I was in the recovery room for about an hour before being moved to my room on the mom/baby floor. Steve and our girls were able to visit Rachel right away and they got to visit me while I was in the recovery room. Breanne was very excited for her baby sister and Alicia kept commenting that she didn't think her baby sister was coming that day (either did Steve and I). We had not even picked out Rachel's middle name at that point but while we were in the recovery room Steve and I let Breanne and Alicia pick out Rachel's middle name- our only criteria was that it needed to start with the letter "M" like both of their middle names. They choose Marissa.

Rachel Marissa was 3 lbs 11 oz. We do not know how long she was- with her being in a breech position for so long she had also developed hip dysplasia preventing her legs from being stretched out to measure. (Poor Steve I think his heart was broken by this as he also was born with hip dysplasia and clubbed feet and had always prayed that his girls wouldn't go through what he did) Rachel has a lot of hair- (no I didn't get my redhead but that is okay) her hair is the same shade of brown as Steve's is. For the most part she has been able to breathe on her own- needing a small amount of oxygen via nasal cannula at times for apnea she experiences during deep sleep. She started feeding yesterday at 4ml per feeding and she now has worked her way up to 12ml. She does wake up on her own near each feeding time and shows signs of rooting. I have been able to breastfeed her a few times now and am pumping every 3 hours. To check that she is receiving enough milk while breastfeeding- she gets weighed before and after the feeding. The theory is that each gram equals a ml of breast milk.She has been urinating on her own- after each void she was receiving a bladder scan and all of her scans have shown her to be on empty- she did have her kidneys evaluated also and they look great. The urologist have cleared her at this time and she does not need to catheterized. Her bladder will be re-evaluated in a couple of months. She has been passing stool frequently and it has just changed over from the sticky dark newborn stool to stool of a newborn on breast milk. We are using Aquafor (I think I spelled it wrong) as a barrier cream on her bottom to prevent skin breakdown. She is so tiny she has no buns yet! Rachel's blood type came back as A+ (looks like all 3 of my girls share the same blood type). Both of her feet are clubbed. We have not seen movement at the ankles or toes but she will kick her legs if you touch her feet. Her calves are definitely atrophied in comparison to her quads. We will be meeting with the orthopedic doctor tomorrow to discuss future bracing and casting for both the hip dysplasia and clubbed feet. I believe she will also be getting an OT & PT consult tomorrow. Her incision on her back looks great. Her vents continue to measure normal and will continue to be monitored for any changes. She is jaundice and was started on her bilirubin light blanket yesterday. She has little eye shields that are put on and look like sunglasses- too cute!!! It is hard to imagine but her little fingernails are the size of sesame seeds- I am not looking forward to when they need a trim.

Happy Birthday Rachel!

8-11-2011

Welcome Rachel Marissa! 3 lbs 11 0z Updates coming soon!

Post Op Week 9 Appointment

8-9-2011

It is hard to believe that it is already 9 weeks since we had the fetal surgery done. To be honest, I didn't think we would make it to this point. Yeah for making it to 32 weeks of pregnancy!!
Rachel had the hiccups during today's ultrasound. She usually gets the hiccups about 3 times a day. She continues to be in the same breech position and likes keeping her hands and feet by her face. She was measured to be 3 lb 10 oz today. She was doing her breathing exercises but they appeared to be much smoother and even today looking like she was breathing like someone who was already born. Both ventricles stayed stable at 4mm. My amniotic fluid dipped slightly to 10.13 but it is still within normal limits- so no worries!

We toured the NICU and L&D rooms. I love how the waiting area outside the NICU is painted and decorated. The NICU rooms are divided into pods with individual rooms for each baby. The rooms are very small- I am not sure how you would fit more than the parents and nursing staff in there. I don't think this will be a problem for us though as we prefer not to have visitors until after we are home anyways.

Post Op Week 8 Appointment

8-2-2011

The ultrasound image is of Rachel using the placenta as her personal fluffy pillow with her hands resting by her chin. She was asleep during this ultrasound also after being active during the drive to Children's Hospital. Her hair appeared to be longer. She was doing her breathing exercises and we saw her swallow amniotic fluid. Her bladder looked full. She continues to be in a breech position with her head by my right rib cage and her butt is tucked down low in the left side of my pelvis. Both of her ventricles stayed steady at 4mm. I believe at next week's ultrasound we will get measurements of her size but I am pretty confident in saying Rachel is alittle over 3 lbs currently. I had a dip in my amniotic fluid volume (11.3) from last week and the ultrasound tech was unable to visualize if there was a separation of membranes due to how low Rachel was sitting in my pelvis. My amniotic fluid volume is still within normal limits so we are not overly concerned at this point- if I notice any fluid leaking I will contact my MFM doc.

We took Breanne and Alicia with us to today's appointment and we met with the New Life coordinator. She helps interact with children that are about to be new big sisters/brothers. The girls were able to express how they felt about becoming big sisters and ask questions. They seem to be most concerned about where Rachel will be when she is born- the NICU. We will be taking the girls with to next week's appointment when we have tours of the NICU and other related areas. I think next week's appointment/tour will ease some of their anxiety.

Our health insurance company continues to be a "dirty" word. They are still denying our claims for the fetal surgery and after care even with evidence that "our St. Mary's network" can NOT met the needs of Rachel or me. They were suppose to be working out a contract with Vanderbilt and Froedert for our care but seem to be stalling or are just ignorant. Enough about that . . . .